A Surprise and a Request

” Likewise the Spirit helps us in our weakness.  For we do no know what to pray for as we ought, but the spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.”

 ~Romans 8:26-27~

 

As many of you know, Jeremy and I decided to take a break from IVF attempts while I finished my schooling and internship to become a board certified music therapist. We decided it would be added stress to keep trying right now, and that it would be better to wait until things slow down. But when does that ever happen, am I right?

After Lincoln died the doctors told us that any child we would conceive in the future  would have a 25% chance of having Leigh’s Disease. Well, I can tell you when you are already the “one in a million,” 25% is really bad odds. Jeremy and I agreed whole heartedly after receiving that information that we would never try to have anymore children naturally again. The thought of even the chance of losing another child was more than we could handle, or even imagine repeating.

So we were incredibly shocked to discover that we are pregnant. What a scary, uncertain, and happy moment all at once, with so many emotions running together. The moment we’d feared, and wondered about, “what if we somehow, accidentally end up pregnant one day?” Obviously, there are preventions, but the fear was still there. Well, now we know what that moment feels like first hand.

I don’t think there are words to describe how we feel right now. Words to describe that our little baby, Lincoln’s little sibling, has a very real possibility of dying just like him. Leigh’s Disease has no cure, and the life expectancy is up to 2-3 years old, although our Bubby  only made it 5 months.

We have seen a prenatal geneticist, and are planning on having an amniocentesis to find out the status of the baby’s health. This test is performed between 14 and 20 weeks and identifies genetic disease. You can read more about it here. I am currently 11 weeks and 5 days, so we will hopefully have the test around the end of this month or beginning of next month. We are still trying to get pre approval from insurance so we don’t have to pay for this costly test without any coverage.

So, that is our current game plan. If the baby has Leigh’s we will be grieving, but also preparing for whatever time we are given with this little one. If the baby is healthy, we will be rejoicing like you’ve never witnessed in your life. One day at a time… that’s all we’ve doing right now.

But I do know this. That the life growing inside of me has a purpose, just like my son’s life had purpose. Our biggest blessing was getting to be Lincoln Robert Huff’s parents, and being privileged to care for him, and love him with all our hearts during his short stay with us. And we will do the same with this child… no matter the outcome, no matter the test results, no matter the fear or the pain that threatens to invade when lying in bed at night. Jesus is still Lord, and his perfect loves casts out all fear.

All we ask is that you pray with us. Your prayers helped us get through the most painful, dark time of our lives. We could feel them… we still feel them. We need people to pray, because we are at a loss for words. The above scripture has resonated so much with us these last couple of months. We know that God doesn’t always change our circumstances, but he will make them into something beautiful if you let him.

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Huff Baby #2 Due January 17, 2018

For Lincoln <3

My dearest little love,

How can 3 years have passed already? It has felt like forever, and yet a breath… I continue to hold you in my heart, and hold Jesus even closer, as I run this path that is so empty without you in it.  Thank you for inspiring me, for being an amazing example of strength to your mommy and daddy. When I face something difficult, I often think of you and all you faced, and I press on. You overcame so much in your brief time here. Words can’t describe the sorrow that I carry with me, as your memory floods my mind everyday. I miss your gorgeous blue eyes, and your special smile with that knowing look in your eyes. Our hearts were connected from the start my little one, and they still are, as part of my heart went with you that day, exactly 3 years ago. I’m forever counting down the days, minutes, and seconds, until we are reunited, never again to part. The joy that will fill my heart that day will be indescribable!

Until that sweet day, I will continue to carry on your legacy Lincoln. The lives that will be touched because of the gift of music therapy that you gave mommy, will spread goodness in your memory for many years to come. I thank God everyday that He chose me to be your Mom, to care for such a precious gift, for no matter how short a time. Jesus brought us together, and He will bring us together again someday my son.

Mommy loves you more than I could ever express, but I know you saw my love for you every time you looked in my eyes. Have Jesus send mommy and daddy a little extra strength today.

I love you Lincoln!!!

Forever,

Mommy

Music Autobiography

Here is a project I had to do for school that was a ton of work, but totally worth it!

A musical overview of the impact of music in my life, and why I want to become a music therapist. ❤

Spoiler- Lincoln makes several appearances. 🙂

 

IVF UPDATE: HEARTBREAK

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A lot has happened over the last few months, and we are finally ready to share what has been brewing. In October we officially started IVF, we had a calendar timeline, everything. We had started the process as we thought we had enough funds raised, but of course there are a million different expenses that add up quick, and we were still $8000 short of what we needed. Of course with IVF you cannot stop once you’ve started or you lose everything. Thankfully we were able take out a loan for the amount (ouch), but we were willing to do anything we had to to have more children.

We had our egg retrieval in November and we had 14(!!) eggs retrieved from my right ovary. Apparently my left one is pretty much a dud because of a cyst I had when I was younger. Luckily, my right one is a power house. Unfortunately, because of so many eggs from one ovary, after the egg retrieval I developed a rare condition called ovarian hyper-stimulation syndrome. I actually ended up admitted to Community North Hospital in Indianapolis and had to have my stomach drained because my ovary was pumping blood and fluid into my abdomen. As you can imagine this was incredibly painful, and super hard to keep a secret! We just weren’t ready to have people asking a bunch of questions (especially the big one: are you pregnant???).

Between fertilization, and waiting for the embryos to grow for 5 days into blastocysts for biopsy and testing, we ended up with 6 that we had tested for chromosomal abnormalities  and Leigh’s Disease. Out of the 6, test results showed 3 healthy, Leigh’s Disease free, embryos that were viable for transfer. So on January 12th we had an FET (frozen embryo transfer) and had 2 of the 3 healthy embryos placed in my uterus. Then the crazy, time standing still, two week wait began until we were able to have our pregnancy blood test.

It is so hard to write this, but yesterday we got our results… and they were negative: the embryos did not implant. We are so incredibly heartbroken over this news, it’s hard to even put it into words. We were so excited to have a glimmer of hope, to know the embryos were inside me and possibly attaching and growing was scary, and awesome, and wonderful, and so exciting. But now to find out that they are gone… it’s so hard. It’s just more heaped on to the loss and sorrow we’ve already experienced, and carry with us everyday.

We now have only 1 embryo left. It will be awhile before we will be able to do another FET because it’s $3500, and we are out of money. If the embryo does not implant will have to start all over from square one: meds, egg retrieval, embryo testing, everything… all to the tune of another $20,000. We are feeling very overwhelmed right now. We were hoping to have a baby before the year was over, now we just have to continue our journey of waiting. I was so sure that this was going to work for us the first time around. Especially after everything we’ve been through, surely God wouldn’t let this FET cycle be a failure? I just don’t understand.

I spent all day crying yesterday, and felt terrible with a fever, sore throat, the works. I think the stress, emotional trauma, the hormone meds, everything just finally caught up with me. Please keep us in your prayers as we are in a serious time of sorrow for this loss, and we are questioning WHY after everything we’ve been through, does this keep happening to us? If God made a way for the finances, why didn’t He follow through with a successful pregnancy? My heart is full of uncertainty about what comes next for us. This journey is endlessly exhausting. I pray and hope disappointment and sorrow aren’t our life story.

This song… it’s what’s in my heart.

Even when my strength is lost
I’ll praise You
Even when I have no song
I’ll praise You
Even when it’s hard to find the words
Louder then I’ll sing Your praise

Even when the fight seems lost
I’ll praise You
Even when it hurts like hell
I’ll praise You
Even when it makes no sense to sing
Louder then I’ll sing Your praise

I will only sing Your praise

(Even When It Hurts, Empires by Hillsong)

The Memory Tree

When Lincoln passed away in February 2014, Riley Children’s connected me to the Indiana Milk Bank to see if I was eligible to donate Lincoln’s milk that I had pumped at the hospital, as well as the many bags that I had  frozen at our house. They use the milk for preemie babies who desperately need breast milk to help them develop while waiting for their own mother’s milk to come in. After a very thorough  application process, I was approved as a donor. So Jeremy packed up the milk and shipped it off. And I never heard anything back… Until last week.

I emailed the Milk Bank to find out what ever became of our donation, and received a very nice email in return. They said my donation added up to 164 oz of breast milk! They also have a tree in the foyer of their office that whenever a milk donation is made because of an infant passing away they add the child’s name on a leaf to the tree. I received these pictures that just brought me some much needed joy! There’s just something about seeing your my son’s name carved in a beautiful way like this that just touched my heart, and is further proof of his existence. I’m so happy to see him honored in this way, and I hope the gift of his milk helped other sweet babies in his memory.

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Love this so much!

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Memory Tree

When you can’t be with the one you love

 

I thought I knew how much I loved Lincoln while he was here. I would’ve done anything for my boy. At Riley all I could think when I saw that sweet little baby in that hospital bed, I would’ve given anything to trade places with him. I absolutely would have died for him so that he could live.

What I didn’t understand at that time was that while he was here, at least I could still show him affection; I could still hold his hand, and kiss his face. I could lay my head down beside his on the little hospital bed because I knew our connection was so much more deeper than him needing to be awake to know I was there; our souls were connected because he was my baby. I knew that if I was close to him he  would know his mommy was there.

I still have so much love for Lincoln in my heart, but there is no release of giving him the love daily. Instead it builds up, builds up and builds up until  it feels like my heart is going to burst. That is part of what makes the pain and grief so incredibly hard. Loss mommies have to find other ways to show their babies love once they’re not there for you to physically give it to them. You have to find a release.

This is why I write. This is why we have our charity Lincoln’s Hope in his memory. This is why we have golf scrambles and walks and sell T-shirts. This is why we do things like visit his grave and set off lanterns and balloons and light candles. Anything we can possibly do to get some relief from the built up love we have in our hearts.

This is also one of the ways I have found some healing. The love that pours out of a grieving parent’s heart is powerful enough to change the world. That is the legacy my son has left behind. A legacy of love. God is using the love that we have for our son to make a difference in the world. Through our love for Lincoln we are able to show others the love that God has for that them.

So while this isn’t the life I would have ever in 1 million years have chosen I am so proud of my son and what he was able to accomplish during his short life. I don’t know how I could be a prouder mom of my first born. He has forever changed my heart, and this world, for the better.

 

Sweet Lincoln

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When we were at Riley with Lincoln, I really bonded with one of the music therapists there. She was so sweet, and would come in with her guitar and sing to him. The music was soothing… I usually just sat there and cried while she serenaded him. It was a true moment of peace in his PICU room.

I showed her pictures and videos of Lincoln because I wanted her to know that he was so much more than the silent little body lying there… he was a smiley, happy, intelligent little boy, who had an incredible bond with his parents. She sang a song to him called “Sweet Little Lincoln,” that just made me fall apart when I heard it. The words say “dear sweet little Lincoln, our sweet little boy, we love sweet little Lincoln, he brings us so much joy. And when we’re together, O how happy we’ll be, ‘cause we love sweet little Lincoln because he is so sweet.”

After Lincoln passed away the music therapist came to our room to help console us and offer her condolences. As we hugged she asked if there was anything she could do for us. I asked her if there was some way we could have a recording of the “Sweet Lincoln” song. I was thrilled when she said she would go record it right away.

We ended up playing this song at his funeral. I cherish this song, and I will always have it bring me comfort and memories of my sweet baby boy.

It is because of our experiences at Riley with our awesome music therapist, I have decided to go back to school and get my music therapy certification. I already have my B.A in Applied Voice from IWU, so I applied and was accepted late last year to St. Mary of the Woods College. I will be going through their Music Therapy Equivalency Distance (MTED) program. This certification will be an equivalent to a B.S. in music therapy. I have been taking the prerequisite psychology classes since January to get ready to begin my music therapy classes this fall. I will be heading there for a short 3 day residency in August, where I will get to meet my professors and attend some music therapy classes and seminars. I am incredibly excited that I have begun this journey! If I can touch one life the way the music therapist at Riley touched mine, I will be so thrilled. I can’t think of a better way to use my gifts and abilities to help others, honor the memory of my son, and to share the love of God.
The “Sweet Lincoln” song is below… I’d love for you to take a listen ❤

2nd Mother’s Day, IVF Update, and more…

This Mother’s Day was definitely different than my first without Lincoln. It was also better. I missed him terribly, as I do every day but was able to make it to church this year, and sang in the worship team. I was so blessed by my friends at church who wished me a Happy Mother’s Day. I know it’s hard for people to know what to say to me sometimes, especially when how can I have a happy day when my baby isn’t with me? I was actually surprised how comforting it was to be included. I still felt uncomfortable wishing others a happy mother’s day, as strange as that may sound.

When I was at work throughout the week at Afena there were folks who wished me a happy mother’s day, and it was nice just to enjoy the well-wishing without having to explain anything or get upset. It was nice to pretend, even if it was just for a second, that everything is normal.

We stopped after church at a local market to buy some flowers, and this sweet humming bird kept flying around me. Now, I love humming birds, but I can never get a good look at them! As this one kept flying all around me I couldn’t help but feel that this was my Mother’s Day gift from Lincoln. 

I wanted to take a moment to give everyone an update on our progress with our IVF journey. With our fundraiser in April we we’re able to raise just over $4000. With those funds we were able to pay the upfront cost of $3850 to the Genesis Genetics lab, who is creating from scratch our family’s personal Leigh’s Disease test, which is just mind boggling that they can even do something like that. We had a genetic counseling session with one of their genetic counselors who walked us through the process of how they create the test, which will take about 2-4 weeks to create. Once the test is complete, Genesis Genetics will notify us and our fertility doctor in Indy that we can proceed with the IVF process.

The next amount we will be raising funds for will be the upfront cost of the actual IVF procedure which includes the medications, egg retrieval, fertilization, implantation, and ultrasounds plus an additional final installment of $1000 to Genesis Genetics. This amount will be just over $8500.

We are planning a large rummage to raise funds about the end of June/July sometime. If anyone would like to donate items to sell we are currently accepting donations now, through the time of the rummage, which we will shortly be announcing the date.

SNEAK PEAK – We are also planning a scrapbook party fundraiser sometime this summer as well TBA.

We want to say an enormous thank you to everyone who has made a contribution towards making our dreams of growing a healthy family closer to a reality. I really can’t express how humbling this all has been. We are forever grateful as we keep plugging away at making this happen.

I hope everyone had a lovely memorial weekend last week. We spent the weekend relaxing with family, and were able to plant flowers around Lincoln’s memory tree. It was so beautiful!