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!

   

  

 

 

When Joy doesn’t mean “Happy”

“Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I will show you how.”
Matt 16:24
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It’s been a rough week in the Huff household to say the least… we finally did something we’ve been dreading, but knew needed to be done. We removed Lincoln’s pack n’ play and swing from the living room. It was hard, and we both cried while we did it, but we both knew it was time. The pack n’ play was still full of Lincoln’s laundry that I had washed the day before we ended up at Riley. The winnie the pooh hooded towel… the little outfit that said “daddy’s best friend” that I had waited to go on sale for weeks at Kohl’s and finally bought that he never even got to wear… it was just too overwhelming. I couldn’t bear to try and sort everything and put it away, so I just stuffed it all in a bag, and put it in his room. I think we just finally reached the point where seeing his empty stuff became more painful than the thought of having to remove them.

I have had several pictures printed and bought frames and hung them up in the living room, and we also have our willow tree items, and other momentos that make us think of Lincoln through out the house that bring us comfort and think of memories with our sweet boy. It’s more comforting to look at those things it seems like at this point.

I still go in his nursery though. It’s difficult to go in there, and I don’t do it everyday, but I always at least look in there daily. His smell is still there. I whisper up a prayer of thanks every time I can still smell my baby, and can feel any sort of closeness to him.

We’re just trying to focus right now on anything that can bring us moments happiness. I always have joy, no matter what because I know I will someday be with Lincoln again, and I serve an awesome Lord that loves me so, so much, that He made it possible for us to be together forever.  But for now, we are here… always having joy, but not always happy. Those moments of true happiness are rare, and I know in my heart they will always be tainted with grief. I’ve accepted that.

It’s so easy to become discouraged, as I see other young families and mom’s with their babies and children… why do they get to have it so easy, and us so hard? How are we going be patient as we wait to come up with funds to try to have more children? We were so excited to find out it would $15,000 instead of $26,000 or more, but $15,000 still is an incredible amount of money.  It’s at these times I just simply have to trust. It’s so hard, but I literally have to make a conscious decision to do so, and say to myself, “I trust in Jesus.” He is better than anyone at making impossible situations possible. We have seen it in our owns lives over and over again. And so we wait, and we trust.

We keep pressing on. Towards what we are passionate about and what we feel that God is calling us to as we seek to help others and share with them the love that has been so graciously given to us.

I want to say thank you to everyone for their prayers and kind words and for donations that have been made to help us on our journey. I was so worried about making the fundraiser, that people would think we were just wanting money and asking for handouts, but my wonderful friends and family really made me understand that this isn’t what it is at all. What we are doing is opening ourselves up and allowing God the opportunity to work. We are just showing up and saying “we trust in you” and believing that He really can do anything.

Commit thy way unto the LORD; trust in him; and he shall bring it to pass.

Psalm 37:5 kjv