Can I say it? It’s been a hard month. I’m finally taking some me time here at a random coffee shop. I just needed a break from life. Now that I’m here, the weight of everything is hitting me. Life has been heavy, and yet still beautiful at times. If you have a child with severe challenges, you will probably understand where I’m at emotionally right now. If you don’t, how could you, unless you’ve been in a household with a child with severe disabilities for a length of time? I’m not trying to sound “poor me,” it’s just the truth. If you haven’t walked in these shoes, it will be hard to explain what it is really like.
When you have a child with severe challenges, even if you have private-duty nurse coverage most days, you are susceptible to the unpredictable changes of the nurses you have come to rely on. We’ve had two nurses unexpectedly quit on us since beginning nursing coverage back in February. This immediately turns your world over for a period of time, not only because you now do not have help caring for your very high-maintenance child, but also because sometimes they send over a coverage nurse, and you have no idea what kind of a nurse you’re going to get, and then you’re also trying to interview several nurses in order to find someone who will be a good fit.
And of course you have to spend half your day training anyone who comes over to help. It’s not like, “Here’s my kid, figure it out.” It’s like, “Here’s a 3 page print out detailing Alan’s diagnosis, meds and supports, and here’s another 3 page print out detailing Alan’s daily routine and now I will walk you through everything for the next 4 hours before I can trust that you know enough to be alone with him for any length of time.”
As much as I don’t want to just complain on here, I have to be honest, it has been a hard month. We had a nurse leave recently and on top of that Alan has been struggling with some new issues. Sleep has been a challenge, Alan has had a hard time managing a recent increase in mucus and it’s been sticking in his lungs more persistently lately, requiring multiple rounds of breathing treatments and lots of chest physiotherapy every day. It also causes problems with keeping his food down because he gets chocked up on mucus. And then his reflux has been worsening as well, meaning that food will just kind of come up more easily than it used to. The laundry is ridiculous. Last week he alone created 3 loads of it. That’s just in one week! Thank God we have an attendant who comes usually once a week and helps with laundry and such.
Emotionally, I am drained. It’s hard to process your emotions when you have these random nights where your child is struggling so much that you honestly wonder if he’s going to make it. I sometimes look at him and feel his fragility so immensely that it scares me. Then I lean in and kiss his sweet cheeks and wonder how long I will have to do so. I want to cry in these moments, but I also feel this strange longing for a life that isn’t centered around my special needs child. Then I feel guilty for even feeling that for a second because Alan is the most wonderful, precious soul that I have ever known. Still, sometimes I just want a break.
I watch the world around me keep turning so effortlessly. I don’t want to join in the things that are frivolous (unless it’s my guilty pleasure of reality TV… Bachelorette… Master Chef… Married at First Sight), but sometimes I want to just have some time to be me again, to not have to worry so much about someone so dependent on me. I feel awkward when friends and acquaintances ask me how I’m doing. Do you really want to know? Sometimes I’m partially honest, sometimes I deflect. “We’re ok. Things are a bit nuts. How are you?” I feel like that’s more appropriate than, “Well, I was up for an hour in the middle of night giving my son another breathing treatment and chest physiotherapy, followed by aggressive suctioning of nose and mouth, he vomited mucus and eventually went back to sleep I think, and then I had to train a fill-in nurse for half the day who, it turns out, cannot even accurately draw up meds, and we have two appointments tomorrow, my 3 year old is regressing on potty-training and I kind of want to crawl in a hole and die. How are you?”
OK, that’s it. I got my negativity out. Thanks, friend. I know that isn’t fun to read. And I also know that you probably have your own gripes and problems that you could vent to me about. I do wish I could hear those as well. We all have our unique challenges and no one is immune to suffering, not even those who seem to have it completely made. I hope no matter what is going on in your life and your soul that you are holding on to the hope of a better day. I know God has good plans and that He is working out His will in and through those of us who are submitted to Him. I know that suffering and trials are tools He can use to accomplish purposes we know little about. I am ok with that, even though it can feel like too much for me sometimes.
Who knows, maybe my next post will be all sunshine and roses? But how boring would that be. : ) Here’s hoping for a little more boring this month. “Lord, please bless my dear little Alan, and my Dean and Henry as well. Please help us Lord, and Jim too. We need Your help every day. We rely on Your Goodness and Grace. Please bless all who read this. Bless our trials and suffering. May they bring us closer to You and mold us more into the likeness of Your Son.”
Hello friends. How have you been? Good, I hope. If we haven’t been in touch you might be wondering how we have been doing for the past four months that I have been mostly silent on here. Honestly, we’re doing pretty good. Our sweet Alan always has multiple issues to monitor and we definitely had a rough patch of one virus after in March and April, one that sent Alan to the ER and got him admitted for a few days (and we now have a Pulmonologist on his team to help monitor his breathing issues), but currently, we are in a stretch where his issues are manageable and he is generally doing well!!
I am beyond thankful for so many things lately. One of the biggest is the HUGE victory for our family that God has brought about through an organization called Every Child (https://everychildtexas.org/). I wrote in the last post that we were needing prayer concerning health insurance for Alan since we would be losing Medicaid in the near future due to Jim completing his training to become a Real Estate Appraiser (go Jim!) and we would be losing most of Alan’s private duty nursing care and who knows what else if we had to go on private insurance. It honestly looked like an insurmountable obstacle because the only way we could be sure that our family would get the resources it needed to care for Alan was to get him on a Medicaid Waiver program where he would be receiving Medicaid based on his diagnosis, not our family’s income, but the waiting list to even be considered for one of these programs is ridiculously long because Medicaid is so underfunded in Texas (basically the second worst in the country). The shortest waiting list was five years and the one for the really good program was fourteen years!!
I had talked with someone from Amerigroup, our Medicaid provider, about our situation, and she referred me to an organization called Texas Parent-to-Parent (https://www.txp2p.org/). I called them and told them about our situation, and they referred me to Elizabeth Tucker with Every Child. I ended up working with one of Elizabeth Tucker’s associates, Kelley Ham. During our first conversation she told me that she knew exactly what we needed to do to get Alan on a Medicaid Waiver program and that all I needed to do was do what she told me to do, one step at a time, and just keep her filled in on every step and she would walk me through it. Those words lifted such a huge weight off of my back! And she was true to her word and a true angel for our family and our dear Alan!
I began talking with Kelley Ham in March of 2019 and we were able to get Alan on the Home and Community-Based Services Medicaid Waiver program (“The Cadillac of Waivers” as I’m told) in June of 2019! Now we don’t have to worry about paying for Alan’s private-duty nursing care or any of his doctor appointments or medications for the rest of his life!! This is a true miracle and answer to prayer for our family. I could never say how thankful I am to God and to the wonderful people who work at Every Child for blessing our family beyond belief.
We currently have nurses in our house 6 out of 7 days a week and it is such a privilege. I get to watch over, cook for and care for Alan, but I don’t have to always be the one to care for him and do the many things that are needed for him every day. My nurses give me the freedom to just be a mom to Alan and to Dean and Henry. For example, I get to prepare lunch for Alan, Dean and Henry, and then the nurses feed Alan slowly and carefully through his G-tube (he has a lot of digestion issues, so much care is needed) while I actually get to just eat my lunch and then snuggle my Alan for a bit after lunch and then attend to household duties or helping Dean and Henry with something while the nurse does some stretching with Alan or puts him in his standing frame. It is such a relief to be freed up to have a more normal life and even get to go out every now and then on the nights where we have night nurses who attend to Alan’s needs during the evening and overnight as well. What a blessing!
To our nurses Diana, Menal and Jane I say, “God bless you and thank you!” To Kelley Ham and everyone at Every Child I say, “God bless you and thank you! Your organization is so very needed in this state!” And most of all, to God I say, “I am amazed at how You work Your wonders in my life and that You took what seemed hopeless and turned it into hope and a future that is bright! I am humbled and eternally grateful.” I know we will continue to have struggles and that things don’t always work out as well as they have for us in this situation, but I also know that God has promised to lead all of His children along, through all of the valleys and dark nights. His Presence and His Promises bring hope into even the darkest of nights, even if we don’t feel or sense it right away. He is at work. I’ve seen it, let me tell you!
There is so much more I could tell you, friend. Let me just say briefly that I have also been blown away by how much I have loved having these nurses in our home. I know for some it seems an imposition and that it’s hard to not just be alone as a family at times. I totally get that, but I also have to say, God has truly blessed me personally by getting to know these special, wonderful ladies.
For instance, our main nurse, Diana, is one of the most giving people I have ever met. She loves our little Alan more than I ever imagined a nurse would. And she is so passionate about giving him the absolute best care possible. She cares for his every need so painstakingly, she reads books to him and she spends a lot of time gently stretching him and helping him work on tummy time every day that she’s here (Wednesday through Saturday). I also love that we get along so well and have tons of conversations where we just share life together. We’ve even arranged it so that she can bring her son on Saturdays because he is close in age to Dean, and I watch over the three boys (she pays me a small fee, but less than she would have to pay for childcare otherwise) while she cares for Alan. It is such a win, win!! She is such an unexpected blessing!
I’m leaving out so many details and things I may get into in a future posts but today I just want to sing the praises! I also want to mention that I’ve decided I want to use this blog for updates on our family and Alan but also as a place to post some of my songs. Here’s a link: https://www.youtube.com/watch?v=a-SANX_yXgM I’m a bit nervous about trying this out, but I’ve felt led lately to just try finding an outlet for my songwriting hobby. I don’t have good audio equipment for doing this, so the sound quality isn’t going to be very good, but I think I’m going to just go ahead and start posting songs and maybe someday down the road I can re-do some of the songs if I get some better equipment.
I’m better on piano than guitar, but right now I don’t have a keyboard and it wouldn’t work to use our upright piano for these videos (my husband helps me record the videos after our kids go to bed and the piano is out in the living room so it would wake them up), so for now I’m going to start with songs that I can adequately do on guitar even though I’m pretty amateur. I’m hoping to purchase a keyboard eventually. I’m also starting to go out to a few open mic nights around Dallas and I’m hosting one of my own at Sucre Cafe in Plano on the last Tuesday of the month. I’m pretty excited about actually doing some fun music things again and I truly hope that God will use me in some way through this outlet.
Hello! I’m very happy to finally have a moment to write. Dear friend, it’s been a wild ride lately. I know this post will be way too long, but it is here for those who are interested in knowing more about our journey.
For those new to the blog, our precious third son, Alan, has Schizencephaly, meaning he has clefts (holes) throughout his brain. He has seizures that are very rare thanks to his meds, he can’t see very well (was diagnosed with a condition called Cortical Vision Impairment), he can’t move very well apart from a few jerky arm movements, at 16 months has trouble holding himself up even when supported in a highchair, is fed primarily through a feeding tube due to feeding difficulties, sometimes coos, smiles THE most beautiful smile usually about once a day, loves his mom and dad and brothers, has a very calm, sweet, brave and stalwart personality, and is completely awesome.
August 2018 (10 months old) – Alan was doing pretty good this month until he contracted a run of the mill cold virus that did a number on his breathing. It came on really suddenly. I used the albuterol we had gotten for him in June when he had Bronchiolitis, but despite all my efforts, his breathing got more and more labored until we finally decided around 2 am to take him into the ER at Children’s Medical Center in Plano.
After a very scary 24 hours involving tons of docs and nurses freaking out when we first got there and Alan having to wear a really weird looking CPAP mask for a while, he quickly started turning around and we were back home within 3 days of our admission. We were sent home with oxygen tanks and this weird “OXYGEN IN USE” sticker we had to place on our front door in case of a fire. Life went on as usual.
September – November 2018 (11 – 13 months old) – I believe September was the month I started taking Alan to outpatient physical therapy twice a week in Rockwall, about 25 minutes away. This was a good experience primarily because I learned some really good stretches I could do with Alan at home to keep him from getting too stiff. I also loved getting to know his Physical Therapist, Erin, and hearing her speak about her and her husband’s struggle with infertility and how God was using that to shape them and work through them to others who are struggling. I found her attitude inspiring and refreshing. I know a bit about that struggle and have sisters and sisters in Christ who have struggled much with this brand of heartache, so I’m sure she must be relying on God’s strength in order to walk through this and not become bitter.
I believe October was the month we switched from Physical Therapy to Feeding Therapy, this time at a clinic a little closer to home, in Allen, Texas. Alan was eating purees every day and drinking a thickened bottle of formula, but we wanted to see if he could start eating more effectively with some support. I quickly grew to love his feeding therapists as well! Alaina and Nicole were like angels for Alan. They loved him and did their best for him, using e-stim therapy. He did pretty well the first month and a half. Sadly, towards the end of November, he started having more issues with swallowing solid foods.
December, 2018 (14 months old) – By the second week of December I had to face the truth: Alan’s ability to swallow was going downhill quickly. I still don’t know why this happened other than his Schizencephaly, but I realized at one point that I had gone from casually putting all his baby food through the food mill to double-pureeing all of his food through the mill and still worrying that he would cough or choke because he had started coughing and choking on nearly everything I tried to feed him other than his bottle.
He was always able to take a bottle. However, he did this pretty slowly, so it wasn’t enough for him to thrive. He was able to take about 12 oz of pedisure (thickened) a day and went from eating three pretty decent solid meals a day in October (although honestly, it took me at least an hour to feed him each meal) to taking about half of what he had been taking by mouth and we would just have to stop because he was coughing and choking too much, despite a ton of attention being paid to the consistency of the food, and despite the fact that we were going to feeding therapy twice a week.
During one of his feeding therapy sessions where he was choking on nearly every bite, his sweet therapist, Alaina, looked at me sympathetically and said, “Have you guys thought about getting a G tube for him?” She told me lots of positive things about these types of feeding tubes. Her compassion and concern for Alan and for us was evident when she added, “I’m sorry that this is your normal. It shouldn’t have to be.”
After finding satisfactory answers to my initial fears of having a G tube (Gastric tube) placed (I was worried that this would hinder his ability to one day eat by mouth more successfully but I was told by many that, on the contrary, having a G tube would allow Alan to relax and be able to enjoy his experiences of taking food by mouth instead of having to associate eating with a fear of choking), Jim and I quickly got on board and were able to having him admitted to Children’s Medical Center in Dallas in order to begin the process of getting a G tube on December 12. We had no idea the series of unfortunate events that were about to unfold along the journey to getting Alan his much needed G tube.
The first thing they did in the hospital after all the initial questions and paperwork was to put an NG (Naso-Gastric) tube in Alan. Of course he did not appreciate having a tiny tube placed through his nose, down his throat, and into his stomach, but they explained that we had to do this in order to see how he would tolerate feedings directly to his stomach and to find out how much milk he could tolerate and on what timetable.
I informed the hospital staff that Alan was currently consuming about 12 oz a day of pediasure and that he had been eating three solid meals a day up until about 3 weeks ago when his ability to eat went steadily downhill. For some reason they decided that we needed to try to give him about twice as much formula as he had previously been getting by feeding him four times during the day and also overnight on a low dose on the feeding pump for 10 hours. I felt fairly sure this was not going to go well because it just seemed common sense to me that no one can just up and start eating twice as much as they had been eating because it would be too big of a shock to the system. But they insisted that we try it because he was underweight.
The first 24 hours of the new feeding schedule seemed to go alright, so I started thinking they knew what was best for Alan better than I did. I think it was a day and a half after we were admitted that he came down with a fever that lasted over 2 days. They still wanted to continue with the feedings but I convinced them to at least give him a few feedings of half formula and half pedialyte since he was so sick. Still, he was vomiting every few hours. It was unclear at the time if he just had an upset stomach along with the fever, or if he was vomiting due to being overfed. It was so confusing and stressful.
We were admitted on a Wednesday evening and the plan was to stay over the weekend and have his G tube surgery on Monday morning. However, his fever didn’t break until Monday morning, so surgery was cancelled. We were sent home with the NG tube still in him and with a doctor ordered feeding plan that still involved twice as many ounces as he had been taking in a day prior to being admitted. We had no make up date set for getting the G tube placed because the holidays were just around the corner and we were still hoping we could travel to see family.
Once we got home, it quickly became clear that we wouldn’t be traveling north to see either of our families over the holiday break. It took us about a week to figure out, but we eventually stopped using the pump altogether in favor of four bolus feeds a day, and I quickly began experimenting with getting very thin purees to go down the NG tube. For some reason, Alan did not tolerate pump feedings very well at all. Something about the experience made him much more likely to vomit than being fed in our arms or in his highchair all at once.
One time while feeding him in his baby chair with the pump, he vomited so severely that the NG tube actually came up from his stomach and was hanging out of his mouth. After I realized what had happened it took everything in me to not completely freak out and just calmly remove the tape holding the tube to his cheek and pull it out through his nose. Many experiences similar to this one convinced us that the pump and Alan simply did not get along. Also, a completely liquid diet did not seem to be working well for our prone to reflux Alan. We tried a food-based formula called Kate Farms and that seemed to help a little, but once I started mixing in some baby food we noticed things get even better.
I would highly recommend the book “Complete Tubefeeding” by Eric Aadhar O’Gorman for anyone with a child with any type of feeding tube. He has an invaluable section in that book about different herbs and spices that are very helpful for digestive issues, including reflux. I have been making and giving Alan a homemade herbal tea with things like Anise, Fennel, Caraway, Chamomile and Ginger everyday ever since I read this section. He also has a wealth of useful and interesting information related to every issue imaginable related to having or being a “tubie.”
One of the biggest tips I ran across in my early days of trying out a “blended diet” (feeding tubies real food purees) for Alan was so simple and helpful. Here it is:
When using a blended diet, put everything you want to feed your tubie through a fine mesh strainer before pushing it through the syringe and into the tube.
This was such a “duh” moment and a life-changing moment when I first read this tip online somewhere. One of the main problems with a blended diet is the issue of clogging the tube. But I have found that this issue is pretty easily dealt with by putting everything first through a fine mesh strainer. We have still dealt with a few clogs, but they haven’t ever been all that hard to resolve through simple means (pushing some liquid through or back flowing the syringe to remove the clog or smacking the tube against a hard surface in order to dislodge the item).
I cannot recommend a blended diet highly enough. No matter what some professionals may tell you in the hospital, I can assure you that a blended diet has been the right choice for Alan. Having real food in his tummy, including a small amount of spices that are very helpful for digestion (turmeric, coriander, cinnamon, etc) has reduced his reflux to the point where we went from being quite certain we wanted to have a nissen fundoplication (procedure where they wrap part of the stomach around the lower part of the esophagus in order to prevent reflux and vomitting) performed at the time of his G tube surgery, to deciding that that would not be necessary after all.
We struggled through January, having to use tremendous force just to get the pureed food to go through the long and tiny NG tube three times a day, and simultaneously dealing with a lot of coughing with mucous and all sorts of different illnesses popping up for Alan and our other two boys. We were prescribed a suction machine that we are still waiting on for Alan to help clear his airway more easily. It is still a struggle, though much better now that he has his G tube and his airway is no longer aggravated by that NG tube.
FINALLY, on January 31, Alan got his G tube! Dr. Megison at Children’s Medical Center in Dallas did a terrific job. Alan’s feedings have been MUCH easier ever since, praise God! Alan also had a supraglottoplasty, which helped with his noisy breathing (laryngomalacia) and also helped to reduce his reflux. We were able to go home about 34 hours after his surgery. It took about a week before he didn’t need any pain meds, but his recovery was quite smooth, all things considered.
Currently, life with Alan is immensely easier than it was even before his ability to eat by mouth declined. This is in large part due to his new nurses. After he came home from the hospital with his NG tube, we started the process to start getting private-duty nursing care. We now have two different private-duty nurses who help us care for Alan in our home Monday through Friday, for 12 hours a day. It is an incredible blessing a a huge relief to our family to have this help. The icing on the cake is that I also truly love these two amazing women and feel blessed to not only have competent nurses to care for Alan, but two new friends who help me balance out the male to female ratio in my house! They have helped me and Alan tremendously.
Alan also got his wheelchair recently, and that has been very helpful. He has a severe level of cerebral palsy (recently learned there is a scale from 1 to 5 and Alan is a 5) so he can just barely hold his head up when sitting but definitely can’t hold himself up well enough to sit up without support. That is why they recommended we get a wheelchair instead of an adapted stroller. It was clearly the right move and we love being able to take him out more easily, and also love having such a well supported place for him to sit for feedings and just throughout the day here and there. It easily tilts forward and back to relieve any pressure that might be hard on his pelvis over a long period of time.
The biggest mountain we are currently still climbing is the matter of insurance. You see, ever since we moved to Texas the kids have been on Medicaid because Jim has been in training to become a Real Estate Appraiser, which is a long process that doesn’t pay well. Jim has recently become certified and will soon start to make more money, praise God!
However, this means that Alan will not be receiving Medicaid for much longer and it turns out that Texas is one of the worst states in the country for this particular issue. We are currently on three different Medicaid Waiver waiting lists and the shortest one is five years long! A Medicaid Waiver would definitely be the best option for our family (mainly because private insurance has a penchant for denying things like much needed private-duty nursing hours) so I am currently in contact with some ladies with an organization that helps families like ours wade through the mess that is trying to get a Medicaid Waiver approved for your child in Texas. More to come on this.
Thank you for reading and for caring about us and precious Alan. I just have to add at the end of this long post that, no matter how much stress and work we go through on his behalf, Alan is so worth it. If you ever get a chance to meet him, you would understand. Anytime you see a person with disabilities of any kind, please bear in mind that they are just as valuable as the “competent” and “capable” among us. I’m not sure that they aren’t actually more valuable.
I believe that many people with disabilities understand more clearly than most that life is not about ease or comfort or accomplishments. They understand that we are blessed just to be alive and to have others who love us. God sees all of our struggles and loves us in the middle of them. He is able to bless us and help us in the midst of and in spite of all our many insufficiencies. He loves us and one day He will make all of our struggles on this earth a distant memory. May God bless you as you persevere through whatever struggle you may be facing now, trusting Him to deliver you in His perfect time, for His glory and good purposes.
Confession time. I was struggling off and on since Alan was born and up until he was about eight months old with a bit of self pity. I wasn’t exactly saying, “Why me?” to God because I truly loved Alan and didn’t want to seem ungrateful for such a wonderful little soul. But I had this running catalogue in the back of my mind of all the hard things God had brought me through in my adult life. There is really nothing I can complain about in my childhood… a statement that I should be thanking God for everyday. But I was struggling with the thought that ever since I left home God has really been chasing me with His refining fires in a way that to some might seem unusual.
We had a really hard couple of weeks back in late June/early July when Alan was eight month old. I can’t remember all of it with clarity, but I know there were tons of appointments, scary seizures, minor injuries, one of my own, and illnesses, the worst of which was Alan’s Bronchiolitis. Towards the end of these few weeks, I found myself doing dishes in a zombie-like state and this statement ran through my head, complete with a melody: “Oh Lord, please, I need some relief.”
This wasn’t that unusual for me, being a songwriter at heart, but I hadn’t worked on a song in quite a while. I was prompted to go take a walk and proceeded to work out a song that was highly biographical, detailing the hardest things I’ve been through and just asking God to please send some relief to my weary soul.
God answered me by sending another really hard day, like harder than all the others. I will spare you the details, but towards the end of the day I was contemplating whether or not to take Alan to the ER. He was really out of sorts and it took over the whole day on a day when we were planning on having some special time out together as a family. Thankfully, God spared Alan of having to go to the ER at that time. Our first ER visit came later in August at a time when I could better handle it.
Then a few days later Alan had the worst day he’s ever had with his seizures. The neurologist instructed us to increase his seizure meds and ever since then he has been much better. It was a hard and scary couple of days and a really hard few weeks.
At the end of this series of hard weeks, I was finally relaxing and letting my mind wander while soaking in the tub. This is one of my favorite ways to unwind, and it was here where I believe God gave me the answer I was searching for. I still had this lingering question mark surrounding all that I had been going through since Alan was born, and piling on other hard seasons in my past of depression, recovery from a car accident, prolonged singleness, marriage struggles, and multiple miscarriages. It all seemed like so much and I just felt like it wasn’t fair. Then all of a sudden, again with a melody, this fell into my head:
“Don’t you focus on your pain, girl.
Almighty God is drawing near.
Why would you focus on that speck
When My Power is right here?
And every valley you have been through,
Did you forget how I paved the way out for you?
My child climb under my wings
Once again, I will cover you.”
I think it’s easy to fall into self-pity or a victim mentality when life feels overwhelming. But this is not God’s will for us. If we truly believe in Him, we can be confident that whatever we are facing, He has allowed it for His purposes, and He can deliver us and make good come out of it if we patiently endure. He is all powerful and full of loving kindness. He won’t forget about us or leave us without help or hope.
So here it is…
Lesson 2: Don’t focus on your pain, focus on His Power. He is at work and He will deliver you today just like He did yesterday. Bring your requests, even your complaints to Him and He will show you great mercy and kindness, though it may not be on your timetable. Wait for Him and trust that He will cover you with His wings and give you rest.
But I haven’t told you about the silver lining. Yes, this was a hard few weeks for us, but in addition to the lessons God has been teaching me, here is what I really want to remember.
There was a day in the middle of that week that was pure bliss for our family. Some of Alan’s issues prevented us from going out to an event that we had planned to attend on July 3 with some friends. However, Alan was doing so much better the next day that we were able to go out on the 4th of July and enjoy a fireworks show in Plano up on a hilltop and everyone did terrific. It was pure family bliss. Dean and Henry’s wonderstruck faces during the show were priceless. I just held a thick towel over Alan’s ears during the show and he was fine. It was a perfect gift that was perfectly timed.
Life can seem so hard, so impossible some days. Then all of a sudden, the clouds part and the beauty catches you completely off guard, even making the hard moments of the past seem irrelevant by comparison. That’s where I want to focus my thoughts; on the good times, the sweetest times, the moments where His Power shines through so clear that it’s laughably obvious. Here’s to that, friend. Hope that’s where your thoughts are headed too, even if you have to dust off some cobwebs of self-pity, doubt or anxiety to get there. Let’s keep pressing on together. Even if nothing this side of heaven turns out how we hope, let’s not forget where our true hope lies.
1 Peter 1:3-9
3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead,4 to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you,5 who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time.6 In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials,7 so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.8 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory,9 obtaining the outcome of your faith, the salvation of your souls.
Hello again. How have you been, friend? Things have been pretty good in the Bender household this past week, Praise the Lord! Jim and I are always so thankful when we have a few days in a row without too much craziness on top of the typical appointments and daily grind. Lately Alan has been sleeping well (from 8:30 pm to 6:30 am with maybe just 1 or 2 cry spells, no feedings!), cooing and being incredibly cute and responsive! He doesn’t see extremely well, but he can see and has been making better eye contact and responding to being talked to and sung to lately.
So that’s our current praise report. But I wanted to address something I’ve been thinking about a lot lately. The hardest times. The times in life when things aren’t pretty and when your resolve, even your sanity, are being tested. Why this topic? It’s not particularly “likeable,” I know. I’m choosing this topic because I’m coming to realize more and more how important it is to be able to endure hardship with the right attitude, and that this endurance and ability to love and trust God even when your stress level is through the roof is key to being truly useful to Him.
I want to share two main lessons God has been teaching me since Alan was born that have helped me tremendously. The first lesson is one on surviving a time of tremendous stress and lack of sleep and self care.
Any mom of a newborn needs to be able to survive days, weeks, even months where your stress level is high and where time to care for yourself is low to nonexistent. This is the period of life where the best you can hope for is a few hours of sleep here and there and just enough time to shovel food into your mouth a few times a day. The rest of your time is committed to caring for your baby and any other children you may have.
As if this is not hard enough, being the mom of a premature baby, a special needs baby, a baby with medical issues, or all three, is even harder. I know I haven’t experienced the worst case scenario because Alan had no major medical issues at birth other than being small and having high bilirubin. He never needed much assistance breathing and he always had a strong heart. He did, however, have feeding issues from birth and seizures that started at 5 months. We finally figured out that he needed his milk thickened at about 4 months, after several months of dysfunctional feedings where he was coughing and spilling the milk I had pumped all over himself at every feeding.
The challenges I faced being Alan’s mom were completely overwhelming to me for the first 6 months of his life. He couldn’t breastfeed and gain weight, so I was pumping around the clock for the first two months of his life, feeding him supplemented bottles and taking him to multiple Doctor appointments most weeks. Then at about 2 months the feeding issues began. We didn’t understand why, but he would cough and spill about half of his milk all over himself at every feeding.
Imagine my despair, not only feeling overwhelmed by a lack of sleep and any time to relax but also having to watch my son struggle to drink the milk I was spending my whole life pumping for him. Not to mention wanting to be present for my four year old and two year old as well and maintain a household and a marriage. I was beyond overwhelmed. I was actually fighting for my sanity at times.
Amazingly, now on the other side of a lot of the craziness, I can honestly say that God was not only faithful, He was gracious enough to help me grow through this experience and teach me valuable lessons that are still with me. I want to share two lessons He has taught me in two posts. The first lesson He taught me when Alan was four months old and has helped me in dealing with stress ever since. The second lesson is one He spoke to my heart when Alan was 8 months old, quite recently, and I will share that next time.
Lesson 1: When facing a stressful moment, give it up to God immediately by crying out to Him for help. Throw your anxiety up to Him, actually going through the motions of throwing something upward if necessary, trust Him to diffuse the bombs, and then step back from the stress, watching for and expecting His deliverance.
The Lord brought this lesson to me by bringing me through some incredibly stressful weeks where I experienced several panic attacks and then speaking to me through a woman in our Sunday School class. Her name is Rupla. She had no idea how the Holy Spirit was using her when she spoke these words to me. I had expressed some frustration at not being able to read my Bible or have any concentrated time with the Lord since Alan was born and not being sure what to do about it. To my memory, this is what she said:
“Don’t think that God wants to have the same relationship with you that you’ve had in the past. He might not want you to spend concentrated time alone with Him in this season. Maybe He wants you to learn how to speak to Him throughout your day as you go about caring for your children. And whenever you have worry or stress, just give it up to Him immediately and then watch what He will do for you!”
This was a monumental shift for me in my relationship with God. Ever since my days at Toccoa Falls Bible College, on the beautiful campus set in the foothills of the smoky mountains, I have always loved having extended, peaceful quiet times of reading the Word, journaling and praying. I had my favorite spot under a tree on top of a hill where no one else ever went. I would spend twenty minutes to an hour there most days, just sitting at the feet of Jesus. It was priceless.
Of course, as a young mother I quickly realized I needed to learn to use my time more efficiently. But until Alan was born, I was still able to squeeze in at least some time to read my Bible and pray during most weeks. But I had never experienced the level of stress and sleep-deprivation for weeks upon months that I experienced after Alan was born.
Just to give you a clear picture of my mental state during those grueling first months of Alan’s life, here is something I wrote in a very desperate moment on the digital notepad on my cell phone in the dark, early morning hours before Alan woke up for his morning feeding. I wrote this in February, right after we found out that Alan had actually lost a little weight over the course of his third month of life when he desperately needed to be gaining weight. His Developmental Pediatrician recommended that we schedule a Barium Swallow Study for Alan for potential feeding issues after she observed one of his dysfunctional feedings. We scheduled it right away but we had to wait a week, watching him struggle through every feeding and knowing that he probably needed more help than we could even give him.
Full of Dust
It can feel like a prison, a cage
Being a mom of three
One is not normal
He’s barely getting by
As are mom and dad
He has trouble eating
I have trouble sleeping
He cries, he cries
I sit awkwardly, trying to feed him
He squirms, he coughs, he spits
This is not bonding
This is a waking nightmare at times
I scoop him up while still drowsy at 6:30 am after pumping,
Time for the morning shift
His warm and snuggly, sleepy, tiny baby body is precious beyond description
Oh, God, deliver me!
I am falling apart
I am fading, tired, a nervous wreck,
A heap on the floor, a crazy person,
Rambling, stuttering, barely coping at times,
Rising to the challenge at others
I’m fighting for my sanity
I’m fighting for my life
Please fight for his!
You are my Savior
You are my God
You can do anything
I’m starting to lose hope inside, please help!
This yoke seems heavy on my back
Is this yours?
It can’t be… or can it?
You said yours was easy, light
Learn from you? Oh, I want to!
I don’t know if I can learn anything right now.
Is this your ideal classroom or just a makeshift one?
Is it a classroom or a prison? When can I graduate from hell?
How can I pass your test?
I am just a worm, please remember
I am weak and lowly, full of dust
I crave your rescue
Please help my baby boy
Please help me
I am begging, I am grovelling
I am barely hanging on
Your are Good, You are Kind
Full of Compassion, yes?
I’ve never doubted this in these 35 years, my Lord, my God
Help me to understand
I’m beyond tired
My husband will be filling in some gaps again today
He “works” from home, he is sympathetic, therefore we are surviving, day to day
Now the crying has started
Now my day begins, again and again
Will this ever end? Will I survive?
Oh please give me a sign of your Goodness,
Please bless me, uphold me with Your Mighty Hand!
Let me sing Your praise again!
You know I will, dear God!
I know this is really raw and intense. My hope and prayer is that this can be of some encouragement to someone going through a similarly difficult time. God can use even the darkest of days to teach us what He wants us to learn and to help us to look a little more like Jesus. May you find strength in Him today, “Casting all your cares upon him, for he cares for you.” (1 Peter 5:7)
If you’ve suddenly found yourself facing a mountain of questions and anxieties you never thought you would face concerning your new baby, questions and issues that you’re not sure you’re equipped to deal with, this post is for you. Finding out that Alan was going to “most likely have severe cerebral palsy and mental retardation” in the NICU was a devastating blow to my husband and I.
Despite the fact that both of us have had experience working with people with disabilities (Jim worked with people with disabilities in various capacities for about a year and I worked with people with special needs during and after my studies for my Masters in Music Therapy), finding out that we would be raising one of these wonderful souls in a challenged body ourselves was overwhelming.
I remember the initial numbness I felt, in complete shock, knowing that my life would now be drastically altered whether I liked it or not, and having no idea if that life was going to seem manageable or if every day from now on was going to be colored with a deep sadness over my precious boy. I remember crying in the NICU while holding him all hooked up to wires and with this crazy, wire-filled cap on his head while undergoing a 24 hour EEG to make sure he wasn’t currently having seizures, since they are almost guaranteed with a Schizencephaly diagnosis.
I remember crying multiple times alone in the NICU with Alan, just overcome by the heaviness of his diagnosis and my concern for him, and quite frankly, for myself and the rest of our family. I remember looking at him and these questions popping into my head:
“How can I ever look at him from now on and not see him as broken? Will I always feel this deep sadness about his condition every time I look at him? Am I anywhere near capable of handling this?”
It was at that low moment that I believe God brought the story of Jesus healing a man born blind from birth in John chapter 9 into my head. His disciples asked him, “Who sinned, this man, or his parents, that he was born blind?” Jesus answered them, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.”Alan wasn’t born this way because God looked away for a second and things went wrong. Alan isn’t an “oops.” Alan was formed by God this way, for His own, mysterious purposes.
And maybe I’m not capable of handling this on my own, but as the Apostle Paul writes in 2 Corinthians 12:9, “My grace is sufficient for you, for My strength is made perfect in weakness.” I have been learning the secret of giving my worries immediately up to God and then standing back, watching for what He will do to alter my attitude or my situation. Yes, I can be very weak. We all have moments of failure. But God is calling us all to lay down our own attempts at strength and to incrementally learn to simply be available vessels for Him to work in and through.
Yes, this has been hard. The first four months went like: treading water, starting to drown, someone reaches down and lifts us up, we get a few desperate gasps of air, then we start the cycle over again. But now that Alan is seven months old I can honestly say we’ve turned a major corner, and things are survivable. And beyond that… I can’t even begin to tell you how much I am connected to that little boy on a soul level.
If you are at the beginning of this journey, please hear me, YOUR CHILD IS AN ABSOLUTE TREASURE AND A GIFT FROM GOD! This may not be clear to you in your desperate moments when you are just so worried and stressed out and sleep deprived. It will most likely feel like more than you can bear and it will, if you will let it, most likely drive you to God in utter dependence like nothing else ever has. But trust me, if you can patiently endure, keep begging God for mercy, and keep doing everything you can on behalf of your precious child, YOU WILL NOT REGRET IT and your life and your soul will be forever blessed by this experience.
This experience will deepen you, will stretch you, will bring new strength to your inner person in ways you cannot now imagine. If you’re anything like me, there will be days it seems the opposite is true. There will be days your behavior is closer to that of a raving lunatic than a nurturing mother. If you’re blessed to have an amazing partner, there will be days your spouse will have to step in because you cannot function, hopefully just for a few hours at a time, or for a portion of or an entire night so you can actually get some sleep. But if you can just keep pressing through the hard, hard stuff, giving your worries up to God on a daily, sometimes hourly basis, there will be so much joy waiting on the other side.
You see, that sweet, strong soul trapped in that body that doesn’t work quite the way most bodies work, is probably one of the most awesome people you will ever have the privilege of meeting. If you do the work of investing, sacrificing, and pouring into that little life, you will get to see firsthand such a beautiful soul beginning to stare back at you, once he learns how to focus his eyes on you and realizes that there is a world going on around him that he can engage with in some way, and the beauty of that little soul will at times take your breath away.
These children can’t do what typical children do. But that in no way makes their souls any less beautiful. If anything, it makes them more beautiful. These children have to learn early that life is hard. But if they’re lucky enough to have parents who love them through the hard early days, they learn that they are intensely loved and they learn the comfort of that love in the midst of so much discomfort and challenge. They don’t have the privilege of growing up feeling like they are the best and the brightest on the block. They know they are dependent on others. But if they can learn that they can depend on others to care for and to love them, their souls will shine with a beauty that is astounding, and it will be most beautiful to your eyes, knowing the soul that lives behind theirs and the hours of love invested into that soul that helped it to shine the way it does.
Every child’s story is different, so I can’t tell you how long it will take for you and your family to get through that really tough first season. And it’s probably inevitable that there will be multiple seasons that feel really tough (though for our family, hopefully not as tough as the one where we hardly slept for four months). But what I can tell you is that, from my experience, that initial shock and the really rough season where your family is adjusting to having a baby with special needs does pass and you will eventually find something that feels like normal.
And realizing that our family had finally found it’s new normal when Alan was about six months old was such a Hallelujah moment for me! It was around this time that he started sleeping a good four hours in a row before needing a little rocking or repositioning and then would sleep another few hours before needing to be fed again. It was actually survivable between the two of us!
If you are a more seasoned parent of a special needs child reading this, or anyone who has experience working with this population, I would love your comments and a few encouraging words for any new parent of a special needs child to read!
I’ll close out with a video of precious Alan, around the time he started cooing, about a week ago. You will see in this video how hard he works just to get one little coo out, but oh, it is worth the wait! He has been getting increasingly vocal lately, which has been extremely encouraging and smile-inducing for me. I pray that this post has been an encouragement for all who know and love people with special needs! God bless.
Let me introduce myself. My name is Lisa. My husband is Jim and we have 3 precious boys, Dean, Henry and Alan, gifts from God. We’re in our thirties, we’ve been married 8 years and we’re currently living in the Dallas area. Why, with 3 sons, is Alan getting top billing in the title of this mommy blog? Quite simply, because Alan is changing my life in ways I never imagined. He has been the biggest surprise of my life.
He was born last October, at 36 weeks, via C-section. My belly had been measuring small since week 30 and once I finally had a sonogram at 36 weeks just to make sure everything was okay, I was ordered to see a specialist that same day because the baby was measuring only about 3 lbs when he should have been closer to 6. The specialist ordered me to go to the hospital immediately for a C-section because there were some questions about what he was seeing in his brain, but nothing conclusive. There were so many questions and possible diagnosis flying around, still nobody really knew what to expect.
I am generally an optimist and we were all so encouraged when he came out with a strong cry and a great Apgar score (tests reflexes and such). Of course, being 3 lbs and 5 oz and an IUGR (Intrauterine Growth Restriction) baby, he was whisked away to the NICU immediately, where he (and I, as much as I could) stayed for the next 3 weeks.
He was a fighter from the beginning, and strong. I always had this sense about Alan that there was a strong soul in that tiny body. He had really high bilirubin and that was concerning for quite some time, but he never had any real issues in the NICU other than that, and being small. And so, after some intense conversations with a few NICU doctors and nurses (some were more supportive than others), we finally got to take him home at 3 weeks old, weighing 3 lbs, 10 oz. It was insane. But it was better than having my heart in two places and constantly having to split my time between my tiny baby and my husband and two other little boys.
But I haven’t yet mentioned the day Jim and I went from being one kind of parents to another. I haven’t mentioned the day our hearts broke. Our hearts have been broken over Alan and are still in the process of mending. In this process I know our hearts are being made bigger, stronger and wiser. Alan has already been one of the biggest teachers of our lives and this will no doubt continue for many years.
On Thursday, October 26, while Alan was still in the NICU, our favorite NICU Doctor, a very matter-of-fact man with a soft spoken demeanor, called us after Alan’s MRI results came in. We were very interested to hear what that would show since another Doctor had informed us after a less comprehensive brain scan that Alan did not have a corpus callosum. She and others informed us that many people live normal lives without this particular part of the brain and only find out that they don’t have one by accident, say after a brain scan later in life. We were a bit shaken by this news, but again, optimistic because of all we were hearing.
Doctor Nystrom’s calming voice had a somber tone that I picked up on the second he began talking. He told me to sit. He asked if I wanted to come in and have this conversation in person. I said no.
“Please tell me. What is it?” “Schizencephaly.” “How do you spell that? What is that? What does that mean?” I heard all these words. “Bilateral, Open-Lip.” “The worst case scenario.” “Severe Cerebral Palsy and Mental Retardation are likely.” “He may never walk. He may never talk.” “Clefts in his brain. Big clefts. Basically holes.” I heard the words and they bounced around, knocking my old ideas about my life over, causing chaos inside my own brain. “He will need extensive therapies, specialists, doctors, teams. You will need support groups, resources.” All these things sounded so foreign, so big and with so many unknowns. How would this affect our families’ story? How would this affect Alan? What would his life be like?
Fast forward six months and here we are, about 20 Doctor appointments with about 10 different Doctors later. We’ve been walking sleep-deprived zombies about half of the time and we’ve gone through so many different phases of worrying and trying new techniques, tricks and medications to address a plethora of issues and to try to get our lives back to some kind of normal. But none of that tells you much about the person that my little boy is on the inside.
Alan James is not a diagnosis. Even though his diagnosis can be, he is not a problem to be overcome. He is a precious child of God and a gift to our lives. Yes, our lives are much more complicated now. Life after Alan has been intensely trying and my sanity has been stretched so much farther than ever before that some of the issues I thought were so difficult prior to this season look pretty laughable now. Still, I wouldn’t trade what we’ve been through or our precious Alan for anything. He is ours, and He was formed intentionally by God for purposes we do not yet fully understand.
God has shown up in such blatantly obvious ways through the past six months. He has brought people and resources into our life at just the right moment to strengthen and encourage us and to help our little guy get to the next level of development. I hope I can share some of those stories in the future. I’ve learned that God can use Doctors, family members, church family and even Craigslist to bring us His deliverance. More on that later.
As difficult and unusual as this all has been (Schizencephaly is a 1 in 100,000 diagnosis, and the severe form that Alan has is even more rare), I know that there are more severe stories out there. Stories of all kinds. I was raised in a loving, God-fearing, upper middle-class family in a country where being a Christian is the norm. This trial is probably good for me. Actually, I’m sure of it. And though I can’t fully understand what Alan’s experience of life is like, I know that God has a special place in his heart for those the world may look at as “lesser.” So forgive me if I ever seem to be complaining or whining. I’ll try not to. I’m an open-book type of person, so I’m going to tell it like it is, for better or worse. But I don’t want to get bogged down looking at things too much through the lens of this world and miss the beautiful story God is writing behind the scenes.
I know that God uses hard stuff for good purposes much more frequently than He uses “nice” stuff. I also know that I can be kind of a wimp at times emotionally. I’ve always been a bit moody and vulnerable to downer emotions. (I am a musician, after all.) This experience has been changing me, re-shaping me. It has been breaking me and I know the re-building will come in time. This season of life has been a fire, burning off impurities and false dreams of an easy life.
My prayer is that our family will come out of this refining season looking more like our Savior, Jesus Christ, who suffered for us, and who walks through every fire with us. Praise God for working on us in such strange ways, even when we’re kicking and screaming our way through it! He is a Good Father and He disciplines us for our good.
Thanks for reading and I hope what I write here can be an encouragement and a help in some way. That’s why I wanted to start this blog. I’m tired of keeping my journaling all to myself. I think it’s time to go public with all these inner monologues. My time is more limited than ever, so if I’m going to be introspective, I might as well be extroverting simultaneously. Seems more useful, more productive.
I also hope this can be a two-way street. Please comment, email or facebook message me or tell me where I can read your blog if you have one, friend. I want to know as well as be known. I need others speaking into my life and I need to know the trials others are going through so I don’t get too caught up in feeling like I’m the only one struggling.