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
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 praiseEven 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 praiseI will only sing Your praise
(Even When It Hurts, Empires by Hillsong)
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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.
Love this so much!
Memory Tree
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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.
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Sweet Lincoln
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 ❤
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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!
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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 msg
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
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A Glimmer of Hope – Our IVF Journey
Jeremy and I would like to share something that we have been keeping very close to our hearts.
As many of you now know, Jeremy and I are recessive carries of a gene mutation that we passed down to Lincoln, which caused his Leigh’s Disease. As carriers, any future children Jeremy and I conceive would have a 25% chance of ending up just like Lincoln; having a short, and probably quite painful, life. After burying our son, I can tell you that for us, 25% is way too scary to even consider getting pregnant naturally again. We simply cannot fathom having to bury another child.
When we had our genetic counseling session at Riley, they explained to us that we could be candidates for IVF (in-vetro fertilization) with PGD (pre-implantation genetic diagnosis) since we are both recessive carriers, and gave us the names of some fertility doctors that had been able to help some other parents in similar situations as ours. We looked up IVF with PGD online and were disheartened to learn that what we were looking at would probably be in the ballpark of $26,000(!!!). So we pretty much dropped the discussion and now here we are a year later, and so badly wanting to continue our family.
Jeremy and I began to pray. A lot. For guidance and funds and basically God to work a miracle in our lives.
I began looking for a doctor to set up a consult with so that Jer and I could know for sure what we were going to need to save up, if we indeed decided to go with IVF PGD. I stumbled across the website of a doctor located in Indy that has had lots of experience dealing with couples in our situation and even he and his wife had to have IVF to conceive their son. I was really drawn to his site, and was feeling stirrings in my heart that we needed contact him. So I gathered up all my courage, and called the office and made an appointment. I have to tell you I was so nervous when I called I thought I was going to throw up! We have been through so much disappointment in our lives, it was so scary knowing we might be setting ourselves up for more of the same.
On March 18th we had our appointment… and I have to tell you that after talking to the doctor (who I will refer to as Dr. D) for just a few second I knew that we were exactly where God was leading us to. I talked about it with Jeremy afterwards and he felt the exact same way. Dr D was so kind and compassionate while he spoke with us, and I showed him a picture of Lincoln (cause I am a proud momma!) and he thought Lincoln was just awesome 🙂
We were also thrilled to find out that since Dr. D has his own private practice, he gets to charge whatever he wants, and we are looking at a total of $12,000 to $15,000, instead of the $26,000 or more we were originally anticipating. (Cue happy dance!) After lots and lots more praying, and counsel from godly family and friends, we have decided that we are going to go through with the IVF PGD with Dr. D.
Dr. D is very passionate about his work, and has assured us that he lets no embryos be destroyed during this process. Everything will be used and have a purpose, even the ones that are affected by Leigh’s Disease may be donated to research specifically for Leigh’s Disease. If we have any left over embryos we also have the option of donating them to a couple who is infertile. Jeremy and I both believe that an embryo of 100 cells in a petri dish is a potential of life, but without being connected to a mother’s womb, growing and thriving, it will never become a baby. Dr. D said it best, “life begins at conception, I can’t say that it doesn’t after years of this being my life’s work, but I’ve learned that not all life has the same purpose or is meant to live. Many “affected” embryos would miscarry if implanted, so early in fact, that you would never even know you were pregnant. It is these embryos, that I cannot with a clear conscious connect to a mother.”
For more info on IVF PGD, please feel free to watch the video below-
http://www.cbsnews.com/videos/breeding-out-disease/
Because of lots of questions we have already been asked by the few family and friends who know about our decision, I would just like to address a few topics-
Adoption-Yes, we have considered it. Strongly considered it actually, and would like to someday go down that path, but we do not feel God leading us there at this time. Jer and I feel that adoption is a calling; taking and caring for someone else’s child as if it were your own is not something to rush into. There are so many other things to be considered, such as- who are the parents? What is their health? Will they want contact with the child in the future? These are just things that we cannot handle at this time. Especially with what we have been through as far as our own family genetic problems. Atleast we now know what we can expect with our own descendants; a child whom we would have no idea of what their family genetics or health is, is just more than we can fathom taking on anytime soon.
I know what it is to carry my own child, give birth, and to see that sweet, beautiful mix of me and the man I love looking back at his mommy. I don’t consider it to be selfish that I want to experience that feeling again. Lincoln was the most amazing thing to ever happen to Jer and I, and no one can fault us for wanting to have more of our own children.
Beliefs-I know that some have missed views about IVF and PGD especially. Please consider what it is like to walk in our shoes everyday. To keep on living while our son is dead because of a disease we passed to him… everyday. To know that at anytime if I accidentally conceive, I may have to bury another child… these are the things we live with… everyday. I would ask that you please respect our decision.
We continue to share our story in such an intimate way because we want to bring honor to God for His hand in everything we have been through this last year and a half… for never leaving us or forsaking us in our pain and sorrow. We are so thankful for the amazing minds He created that have invented the science to make a healthy family a possibility for us. We are excited to continue the legacy of our son Lincoln, who changed the world forever in the 5 months we was here with us, through his foundation, Lincoln’s Hope.
So on we forge down the path that God has called us to… and with the urging of family and friends we have begun a fundraising paige that will hopefully help us down our path to a healthy family without going into serious debt. We don’t want anyone to feel obligated or pressured to donate, but we have been asked about it by enough people that we have decided to proceed with a fund raising page on indiegogo. If you would like to check out our page or make a donation, please click the link below-
https://life.indiegogo.com/fundraisers/our-ivf-journey-a-sibling-for-lincoln/x/10249074
Please continue to keep us in your prayers while we lean on Him with everything we have.
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A Year Without You
I haven’t written in awhile as the emotions have been pretty intense… sometimes there are no words when your hurt goes so deep. Exactly one month today ago today, we had the one year anniversary of our dear Lincoln passing away into heaven. It has taken me this long to be able to write about it.
Jeremy and I both had the entire week off from work leading up to the actual date…
We spent it relaxing and spending lots of needed time together.
Our wonderful family and friends spoke encouraging words to us throughout the week.
I had a girls day with one of my best friends.
We received a beautiful care package from good friends.
We spent a fun day in Indy with friends.
Our wonderful church family surprised us with a weekend away.
We were blessed.
Friends and family also messaged us with “good deeds” that they were doing that Saturday in honor of Lincoln. Some of things were donating bibles, clearing snow from neighbors driveways, paying for other’s meals at restaurants, etc. It was so comforting to hear of the good that Lincoln inspired that day.
We also watched videos of us singing to Lincoln at Riley the night leading up to him passing away that we haven’t seen since he left us. After lots of thought, we have decided to share one of the videos. It was an incredibly personal moment, but the presence of God was with my son his whole short life, and He was there with us in that room as our sweet boy slowly began slipping away.
In this video, we are singing a song to Lincoln that Jeremy wrote called “What a Day”. The lyrics speak about what an amazing day that it will be when we finally see Jesus face to face and will sing praises to him in person. To think that just hours later my own son would experience just what this song speaks about… it just overwhelms me. I can barely see to type as I cry thinking about holding him for the last time, kissing him for the last time… but then the Father whispers truth into my heart; that while those may have been the last times on this earth, I will hold Lincoln again someday and kiss his sweet face. And what a day that will be…
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As The Dreaded Day Approaches…
Lincoln’s Build-a-Bear “Spots”
When I first began this blog, I was telling our story day by day of our experience at Riley. I had to stop and give myself a break because I just couldn’t handle the emotions of reliving those days as I wrote. It helped at first, but with Jeremy struggling at work with PTSD and me working and also trying to keep our bills paid and everything, it proved to be too much to finish at that time.
But I think I’m finally ready to continue it next month. It feels like an unfinished book that needs an ending. I think it will help me process my grief in the upcoming month. I have to be very careful when I let myself dwell on events of that week, or I will be sinking into a bottomless hole before I know it. The memories cause extreme emotional and physical reactions. Before I know know it, I’m right there back in that little PICU room reliving every moment.
February 21st will be one year since Lincoln left us. Jeremy and I are both taking the entire week off from work. This day weighs heavy on my heart and mind as it approaches. I just can’t believe I haven’t been able to hold and kiss my sweet baby for almost a year. It doesn’t even seem real. His swing still sits over beside the tv. His play pen is still out with his folded little outfits and towels still stacked from the laundry we did the days before he died. I’ve moved a lot of his things just into his nursery because they hurt so much to look at every day. His stroller and car seat. The unopened high chair he never got to use… But those last few things I haven’t had the strength to move yet.
I tried to clean out his play pen but when I came across one of the last outfits I bought him, that I had been so excited to buy, that he never got to wear, I just couldn’t do it. Our grief counselor once told me that we shouldn’t push ourselves to clean and move things we aren’t ready to because you can only do it once. And right now we’re not ready. I don’t know when we will be. And that’s ok.
Please keep us in prayer my friends as we approach the anniversary of the death of our son. It was truly the worst day of our lives. I actually feel guilty for even saying that because it was also the day that Lincoln was set free from his painful and diseased body, and made whole and new in Christ. So while my mommy heart knows that was truly best for my darling baby, that doesn’t mean that my heart wasn’t shattered that day too. All my hopes and dreams of a toddler running around the house this winter, first days of school, playing football and piano, years of birthdays and holidays and so, so much more were taken from me in an instant. And I have to live with that the rest of my life. Everyday he is missing. 50 years from now he will still be missing.
God give me the strength to face each day with courage!.
Lincoln's Hope 