On the Day She Turned Two Months

 

She had her first out-patient procedure.

We are here in Denver as I type this post, and she's under anesthesia. This morning began a series of things in a search for more answers and a plan to proceed.

Originally, doctors were going to remove a skin tag in her diaper area.  However, in thinking more about it, they decided to wait.  Based on its size and the unknown intricacies of her vascular malformation at this point, they didn't want to risk the bleeding at this point.

Also, we have seen a bit of oozing out of her belly button, so they have ordered a renal ultrasound to rule out a couple of things with that.

They have completed the vaginal and rectal exploration, determining surgery is not necessary in either place - praise the Lord!  And, she's currently having an MRI of her abdomen, pelvis, and spine - as well as an MRA of her abdomen and pelvis.  All of that imaging will help us see exactly where the spinal cord is tethered, how deep and intricate the vascular malformation is, and if there are any other issues that we might not currently be aware of.  

So, we wait.

In our two months of waiting and finding answers, of wondering what time will bring and of trying new things to make her more comfortable, I have learned a lot.  And while our cross is not someone else's, and knowing there will always be someone with a much heavier cross, God has revealed so much.

I've learned...

...there is still so much goodness and beauty to be found...even though her body is broken in ways, her soul is whole, and she brings us so much joy.

...when people offer to help, it's important I let them, as much I may feel guilty I am not able to help them right away in return.

...that Jeremy and my relationship has never been as important.

...there are days when I basically seem to have a good handle on things and days that hit me out of the blue to remind me life is peaks and valleys.

...sometimes it feels like I can't possibly think of anything else.

...health issues in one child can cause me to feel like I can't find a good balance in taking care of the noticeably sick one while also meeting the needs of the others.

...help comes in so many forms: meals, prayers, texts, calls, caring for kids, sitting and visiting, or even caring for your helpers.  But, it's important to let others help in the way they feel called (have I mentioned I struggle with this, hehe?!). 

...a million cares and concerns can be eased with the weight of a sweet baby on my shoulder.

...we are never alone.

...God prepares us for these moments years before we face them and He gives us the grace necessary for the moment (maybe not the year, or the day, or even the hour to come)...but the moment He has covered.

...miracles and affirmations aren't always what we envision, but if our eyes are open, they are all around.

More than anything, I've learned this...

...it is important to reach out.  

I've spent my life not knowing exactly what to say.  I've "put myself in someone's position" and convinced myself they want to be left alone or not bothered.  I've never been able to "understand what he/she was going through."  And so I haven't sent the text.  I haven't made the call.  I haven't popped a note in the mail to let someone know simply that I care.  I haven't stopped by to give a hug.  And, I've realized now...it doesn't matter what you say (by and large).  It doesn't matter how you show your love.  It doesn't matter if you were "never that close".  There is nothing too small.  Reach out.

Say something.

I have learned that so beautifully in the last nine weeks, and the only way I can describe it is humbling.  To feel encapsulated by prayer and love is indescribable.  I sit here and think, "How will we ever return all of this love?"

But, I know this.  Our strength has come from the prayers of hundreds/thousands of people...many who we don't know.  When people say, "I don't know how you are doing this."  I do.  Because of you.  God through you.  

Thank you.

(a few days later...)

She came out of anesthesia like a champ.  She was downing the sugar water and "talking" to anyone who came to her bedside.  

The next day in our meeting with dermatology we learned there is not much more we can do for her ulcers.  We are doing the best we can, and they may heal or we may struggle with them for some time.  Only time will tell.

The following day was full of appointments to discuss results.  

We learned that her vascular malformation at this point does not appear to be very deep...a huge answer to prayer!  There was a mass on the scan that they thought was worth doing bloodwork on - it came back clear, praise God!  Her kidneys also looked great!

The spine was a different story.  Her sacrum is very "messed up" and her spinal cord tether is one of the most complicated cases they've ever seen.  The neurosurgeon is unsure if he will be able to de-tether it, but he will try!  It will likely pose problems with bowel and bladder control as well as mobility.  

But again, we wait, and we pray.  And we do the very best we can with God's grace moment by moment.  

And we ask God for healing, because miracles do happen.

I Didn't Want a Child with Special Needs

 

I was afraid.  Always.  With every new pregnancy, there would be moments in that first trimester that I would worry myself sick about the possibility of something being "wrong" with the baby.*

*Before I go any further, I am not well-versed in this nomenclature, and I'm sure I'll say the wrong thing unknowingly, but I never mean to offend.

I would anxiously await the genetic testing or anatomy scan and breathe a huge sign of relief when everything came back clear.  Although I know God doesn't work this way, I would think to myself, "We've had four (or five or six) healthy babies...when will my luck run out?

Typing all of this out humiliates me.  It wasn't that I didn't love those around me with special needs.  It was that I didn't think I could handle it.  It was fine for my neighbor, or that beautiful woman of faith who had a special needs child (or five!), but I wasn't that strong.

Then, we found out at twenty-three weeks that Agnes had a two-vessel cord...which meant next to nothing.  She could have health issues, or she could be completely fine.  Since her genetic testing was normal, I didn't give it much more thought.  She was "good."

Then the nursery nurse's words, "Umm, just so you're not alarmed when you change her, she doesn't look quite normal...and she has a big bruise down her leg."

Needless to say, a million questions ran through my mind -- I hadn't even been able to completely see her as I was hemorrhaging.  Would we be able to announce we really had an Agnes?  Was she okay?  What about the bruising?

As we learned more those two days, and the doctors threw out the name of a syndrome to attach to her health issues, the questions and unknowns weighed heavily on us.  What would she go through?  What crosses would she have to carry?  Would she grow and develop normally?  Would she be in pain?  Those thoughts made me ache for her.

I wanted to fix it all.  I wanted to take her pain.  I wanted to carry her crosses.

But...in those early moments, was it anything like I thought it would be...the things I was afraid of?  No.  Not at all.  In fact, the love for her was fierce...deeper than I knew I had in me...more life-giving than I could imagine.

And, that's when I realized the birth of a child with special needs wasn't a curse.  Instead, it was a tremendous gift.  God chose us.  He gave Agnes to us.  And, while I don't for a minute believe God causes pain or punishes us with trials, I do believe He uses them to bring us closer to Him.  And, that He has already.

I was asked if I did anything during pregnancy to cause this.  And, while I can't honestly say I haven't thought of that, the very next day a man I didn't even know shared the story of the blind man in the gospels...the one in which His disciples asked if he or his parents had sinned to cause this, and to which Jesus replied: "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."

It is so the works of God might be made visible through Agnes.

Later that week, I was listening to a podcast from Father Mike Schmitz...and he said this:

The best is going to be the cross...for me and for you. The best is going to be denying this part of me who wants to run away and say yes to the Father’s will...for me and for you.  

In our love for others we want to spare them...pain, difficulties, struggle. But that means our love would spare them from greatness. It would spare them from the opportunity to love heroically. It would spare them from the opportunity to lay down their lives out of love.

In our desire to make things easier for them, we would give them mediocrity and rob them
of the opportunity to live and to live heroically.

Love demands sacrifice.

My tendency as a mother is to want to take this pain and "being different" away from Agnes.  But, in doing so, I would rob her of the opportunity to use her crosses to bring others closer to Him.  And, to do that would be to play God.

So, instead, these last five weeks, we have said so many prayers...begging for healing and understanding...asking God to show us how best to care for Agnes and how to lighten her burden...all the while praying we use what He has given her and us to bring greater glory to Him.

Agnes may never receive the miracle of full healing, but there are miracles happening all around us...in the prayers offered, the the mindsets changed, in the finding of excellent medical care, and in the humbling of her mother.

The diagnosis I used to run from in fear is the one I'm thanking God for now.  I'm so humbled and honored that God chose us to be Agnes's parents.  I just pray I'm worthy of such a gift.

I didn't want a child with special needs.  I needed one.

She is how He desires.  And, that, is perfect.

I'm a Little Pencil in the Hand of a Writing God...

...sending a love letter to the world. - Saint Teresa of Calcutta

I'm going to start sharing more of Agnes's story here as a way to document her/our journey and to keep those interested updated.

Where to begin?

Many have asked if we knew anything was "wrong" in utero.  The answer is no.  Of course, she had a two-vessel umbilical cord, and I had polyhydramnios, but they don't know if either are connected to her health issues.

When she arrived, the nursery nurse cleaning her up commented on the big bruise she had down her left leg and another issue of concern.  Jeremy and I didn't think a whole lot of it, until our pediatrician made rounds that evening to examine Agnes.

She came to our room with a little heaviness unlike her and said, "I know you're very concerned about the vascular malformation on Agnes's leg."  We weren't.  We just thought it was a bruise.  Then she mentioned it was the biggest she had seen, and there were other urological issues she noticed.  She then said she was going to spend the evening doing some research.  And she did, the entire night (we love her!).

The next morning she ordered many tests.  She wanted to check her major organs, her bladder and intestines, and run some bloodwork.  It seemed for those two days, with each new discovery more tests were run.  We left the hospital knowing this:  Agnes has a very large vascular malformation/hemangioma spanning from her bottom to the bottom of her left foot.  She has a few complications with urology.  Her spinal cord is tethered.  Her left hip is a bit underdeveloped.  Where she has a bowel movement is too small.  And a couple of other things.

Our pediatrician also mentioned the possibility of her having LUMBAR syndrome...a very rare syndrome - less than one in a million.  In fact, in the medical journals I've read, it says there there 55 known cases since 1986.  We knew leaving the hospital that a full body MRI could reveal more issues but that her heart, brain, spleen, liver and other organs looked great - praise the Lord!

We were to be referred to Dallas Children's for a consult with a medical team. And, I began to research.

In researching, the few articles/journals that discuss LUMBAR pointed to a few main doctors leading the research.  In another post, I'll share how we discovered those doctors were at Texas Children's in Houston...so we began communicating with them in hopes of going to Houston instead of Dallas.  

During the first year of life, the vascular malformation/hemangioma proliferates at an exponential rate and can begin to ulcerate.  In order to slow this growth, Agnes needed to be put on a blood pressure medicine which has a side effect of slowing the growth of infantile hemangiomas.  In the first few weeks, it started to grow and begin to ulcerate, so I felt it was imperative that she was seen soon.  

Going back and forth with Houston (Dallas wasn't very responsive), we set up an appointment with a team there for mid-September.  Om Tuesday, the 8th, they called saying a team in Denver could see Agnes the next morning, so we packed our bags and drove there that evening.