I’ve been racking my brain trying to determine how to write this post. How to reflect on a year that has in all honesty, been incredibly hard on our family. How to really sort all of the bad from good and heartbreak from hope. I want to start the new year on a good note, which is hard to do when the end of this year has been particularly painful for us. So I’m gonna start with the not so great moments in the hopes that if I save the better moments for the end, those will be what stick in my head and my heart as we close out 2018.
We spent the better part of this year, especially the first half, trying medication after medication in the hopes of stopping Madison’s seizures. John and I spent months having to give her intramuscular shots, twice a day, for a treatment that sadly didn’t even work. A treatment that caused her immune system to be wiped and kept us in the house with no visitors for months. We added another med that caused her to lose the little bit of tone she had, has given her chronic constipation issues, and has the potential to cause problems with her peripheral vision. A medication that although helped her seizures a little, has not worked at successfully stopping her spasms either. A third AED was added over the summer that we have seen the greatest benefit from (which I’ll talk about when I get to the good), but is highly addicting and can be severely sedating when altering the dose. Pumping your child full of medications is difficult and sad, especially when you see each one fail. I can’t imagine what Madison’s little body feels like each day. And although we have recently seen improvement, the constant trial and error of meds has definitely taken its toll on us.
We also watched Madison get pricked countless times for blood over the year. Something that never gets easier for me. She’s an extremely hard stick and it’s never quick and simple. I watched her fall sick with bronchiolitis and end up in the hospital. I watched her go into respiratory distress from it, which landed us back in the PICU in the EXACT SAME ROOM we lived in for a month as we watched her fight for her life at just 11 days old. I held her as she thrashed and cried all night long over an EEG. I buzzed for nurses to immediately remove the leads as I watched her have seizures that she never has due to the stress she was putting herself under. I watched her temp rise to 104 and her heart rate become tachy in minutes; watched nurses give her a rescue med to calm her small body from getting worse, all a result of what should have been a simple EEG.
We’ve had countless sleepless nights from severe constipation and teething issues. Teething has especially worn us down this year, particularly in this last month. I know teething sucks for all babies, but for a child with neurological issues it is experienced 10x worse for all involved. Madison can’t hold teethers to soothe her pain or help break her gums down. Her brain doesn’t know how to tolerate the pain and causes her to scream and cry in agony for hours upon hours, day and night, with nothing consoling her. I can’t even begin to describe how physically and emotionally exhausting it is to watch your child suffer to that extent for weeks. Her teeth take forever to actually cut, and she currently has about 6 coming in all at once. We’re just now starting to see the light at the end of this tunnel and I pray she starts 2019 with some new teeth so we can get back to the sweet, alert girl she was becoming.
On top of the teething hell we’ve been going through with her, we’ve also endured probably the most heart wrenching obstacle of the year. What most of our friends and family don’t know is that John and I experienced a miscarriage in October at 5 weeks along. It was devastating. When we wound up conceiving again after, we were both thrilled and terrified. I couldn’t shake the paranoia of losing another baby after October. Even after seeing our baby and it’s heartbeat, I felt unsure. I was constantly waiting for the worst to happen. And when it did at just over 8 weeks along, again, I was in complete shock. The weekend right before Christmas, I started spotting yet again. I had a repeat ultrasound and baby was fine; still growing, heart still strong. But even so I couldn’t shake what was happening. As much as I wanted to have hope, and as much as I knew spotting could be normal, I just knew in my gut it wasn’t normal for me. This was too similar to what happened in October. Seeing our baby okay in some ways made things worse for me. I spent Christmas weekend consoling a teething toddler and living in a state of fear. Not knowing if my baby was still alive in side of me. Feeling as though I was just waiting for the inevitable; which it sadly turns out, I was.
Christmas is supposed to be a time of joy and hope. It’s supposed to be even more special once you have kids, but for us, and for many special needs families, it becomes more difficult. It’s already painful to celebrate knowing Madison won’t respond in the way we had envisioned when I was pregnant with her. It was especially hard this year because she was in pain from teething and extremely irritable.
After an exhausting day, we headed to bed not knowing that it would become a night from hell. Madison was up crying ALL night. And at midnight I began experiencing cramps so bad they felt like contractions. I hadn’t felt any pain since the spotting had began which was the only sliver of hope I had about things being okay. When the pain set in, I knew things were over. I can’t describe what it is like to lay there in agony knowing your body is preparing to pass a child you just saw alive and breathing. The following day I was sent for a follow up ultrasound, even though I knew what was happening. The worst is that the techs won’t tell you anything; they make you wait for your doctor to review the results. It was a strange feeling to know that these same techs who saw my baby’ s heart beating just 5 days prior and who told me to relax, this can be normal, were now going to find my baby with no viable heartbeat. They would know things were over before I would officially have the word from my doctor. It’s also a really strange thing to tell them you’re on your 3rd pregnancy, but have only one living child at home.
Even though I knew what was happening, hearing my doctor say there was no longer a heartbeat was crushing. John and I just couldn’t understand why this was happening again. I can’t for the life of me understand God’s plan for us, and why constantly taking our children is a part of it. I’m thankful everyday that Madison survived meningitis, but it doesn’t lessen the fact that to me, she was taken from us at 11 days old. I got less than 2 weeks with the baby girl I prayed for my whole life, before her life would be stolen, and she would be left with a path full of challenges. And now as we were ready to grow our family, two more of our children would be taken. How much heartbreak are we supposed to endure? We had no issues with Madison’s pregnancy and I had foolishly just assumed we wouldn’t have any issues going forward. This was going to be the easy part. And now this has become hard too.
What makes things worse for me is that I truly loved being pregnant with Madison. It was the most enjoyable 9 months of my life. I have looked forward to being pregnant again ever since I gave birth, even knowing things will be harder this time around having a special needs child at home. And now that joy too has been stolen from me. I will never be able to look at that pregnancy test and feel pure happiness. I won’t get to just be excited and accept the pregnancy and move on. Now I’ll be full of fear. Counting each day. Waiting for the worst to happen. There is nothing more magical than carrying a life. I always told my husband that I felt bad men don’t get to experience it. And now when the time comes that God will finally bless us with our rainbow, I’m going to be terrified and that makes me angry and sad.
So to any of my friends that I was supposed to see over Christmas break and I didn’t reach out to, I’m sorry. And to the few friends that knew what was happening, thank you from the bottom of my heart for your kind messages and for sending us so much food! And to my husband, thank you for running the house. Being put on bed rest when you have a child is near impossible, and even though it breaks my heart that pretty much every break you’ve had off from work this year has been tainted by something, I’m so grateful that you’re such a hands on father and husband.
John keeps assuring me that we’ll get through this, and I know he’s right, and that we will. But if I’m being honest I’m sick and tired of us having to get through something. I want us to just be able to live our life. I’m tired of every day having to be some sort of obstacle we have to get through as a family. It’s not fair. We’ve had enough. And I pray 2019 gives us a breather. I hope it gives us happiness and allows us to simply live. I hope it’s brighter for all of us.
And now for the good. Yes, even though it may sound like I’m harping on the bad of this year, we did have some blue skies too. And writing this post has really allowed me to remember them in the midst of grieving over the loss of our baby. For one, Madison was able to come off both her lovenox and phenobarbital medications. Lovenox is a blood thinner and was used to treat a thrombosis she had in her brain from the meningitis. Unfortunately it’s given as a subcutaneous injection, which meant John and I had to give her shots twice a day, every day, for the first 8 or so months of her life. Shots that left her poor arms and legs quite bruised. But thankfully her latest MRI gave us the okay to stop with this treatment, and that was a huge win for us! We also weaned her phenobarbital which was a seizure medication that did nothing but keep her in a state of fog. I haaaated it, and although the wean took us months, I’m so glad she is off of it.
Madison also made improvements in therapy in most areas. She can hold herself up for longer periods of time, can bear weight on her feet, and has begun responding to lights and grabbing at toys more frequently. She has improved at eating puréed solids and has begun learning to drink from a cup. She is finally bringing her hands to her mouth and moving her arms and legs with more purpose. She can roll from her back to side. She has also become more vocal. We began ABM therapy which we have seen help tremendously with Madison’s body awareness and movements. We also found our new speech team who we love and who have already made a big impact in regards to Madison’s feeding abilities.
We celebrated Madison’s first birthday which was huge for us. When you don’t know if you’re child will make it to just one month old, you can’t imagine what it feels like to make it to one year. She may have slept through most of her party, and cried during her cake smash, but boy was she celebrated. She swam in the pool and went to the beach for the first time. She also traveled to Vermont twice, and flew to Florida! Trips we didn’t know if she would ever be healthy enough to take, we took!
One of our biggest wins this year is in regards to Madison’s seizures, and has happened more recently. We added a new medication, Onfi, over the summer that people in the epilepsy world tend to love or hate. It’s classified as a benzodiazepine, which is highly addicting. It’s a terrifying thought to give a baby a drug that she could very likely become dependent on. However after a weighing our options, talking to her doctor, getting a second opinion, and doing our own research, we decided to try it and to increase extremely slowly. Although she had a delayed reaction to it, a few weeks in we saw Madison have a good reduction in both the frequency and severity of her seizures. It was the first time we really saw a noticeable difference. We also saw her development pick up. We wound up going two weeks “seizure free” in September, before they unfortunately returned. But after her “EEG gone wrong” in November, we decided to increase her Onfi as we waited out decisions regarding the ketogenic diet and medical marijuana.
Since that increase Madison has yet to have her normal cluster of spasms! I had almost forgotten what it was like to see her wake up without having seizures. It’s been such a blessing. She still has these small jerks occasionally, and those very well could be seizures. We really don’t know for sure, and won’t until we undergo another EEG. In the meantime though it’s been incredible to see her wake up happy. To see her development and voice pick up again, and to catch those occasional smiles. John and I don’t say she’s seizure free, nor do we talk about how wonderful the reduction has been, but that’s mostly because we’re terrified they’ll come back like they did in September. For now we will enjoy each day that she’s cluster free and pray that this good streak continues.
I also started this blog this year which has been really cathartic for me, and so well received by all of you that have taken the time to read each post and share in our journey with Madison. It’s also allowed me to connect with other mamas going through similar circumstances, and connecting with them has been one of my greatest blessings this year. So to all of you and to your little miracles, thank you for your advice and support. It takes a village, and I couldn’t get through this without all of you.
John and I have certainly experienced a lot of lows this year. After Madison got sick we knew things would be hard, and had prayed that 2018 would be better to us. I’m really not sure if it was. Watching Madison suffer will never get easier for me, but through all of the obstacles and pain she has faced this year, she has also made great strides that can’t be ignored. As I write this very post, she’s sitting so calmly in her new chair smiling, looking around, exploring her surroundings. It’s funny how we spent the last 3 weeks in complete hell, but seem to almost forget all of that as soon as she bounces back.
And so now it’s time to start over and I’m happy to leave this year behind. I pray that 2019 will really be ours. I pray for Madison’s health and development to improve. I pray we are able to bless her with a sibling. I pray John and I are able to keep being strong for ourselves, for each other, and for Madison. I pray my family and friends experience nothing but joy and happiness. We ended this year on a particularly low note, but by taking the time to really reflect on everything that has happened it has definitely been a nice reminder to myself that we have seen good things too. No matter how hard things are, and things have really been hard for us lately, there is always a reason to be grateful.
Thanks to all of you who have taken the time to read this post, or any post this year. We’re not looking for pity, but hope to be a reminder to you all to be thankful for what you have. We strive to give hope to others going through hard times. And most of all we wish you a happy and healthy New Year!
“Resolve to keep happy and your joy and you shall form an invincible host against difficulties.” -Helen Keller