Early this week we started a new medication regiment with Malachi to see what we could do to help his tummy. His ultrasound came back clear so we were hoping we could get his discomfort (that leads to seizures) under control by doubling his delayed release medication. The first few days were shockingly better with very few seizures. I was so confident we had found a working solution.
But Friday rolled around and the discomfort returned with a vengeance. Malachi started having massive seizures where even his face convulsed which is new for him. We battled seizure after seizure and his tummy was rock solid. I was able to try a new emergency medication for severe tummy aches like these and thankfully it did calm the cramps for short spells, but the underlying issue is still lingering.
When Malachi goes through these spells he is hands on 24/7. It isn’t safe to let him out of your sight and he is the most comfortable being held. And he definitely can’t be laid flat as it seems to trigger the seizures so we camp out in the living room and try to manage the best we can.
This week we will be tweaking his medication a bit more hoping to find the perfect combination. After two full days of severe seizures Malachi is wiped out. On days like these his brain doesn’t allow him to fall asleep even though his body clearly needs it. Today he has only had a handful of rough seizures so I am hoping we are back on track. He has actually had two biggies while I have been typing this blog.
That also means mama is running on fumes so if I type some odd things tonight just overlook them!
This week the boys brought home their first puppy, Shiloh!
I hope you all are ready for picture overload.
Malachi had already dealt with some intense seizures throughout the day on Friday, but he was on pins and needles as we went through our final training session. When we started wheeling him towards the car to load up Shiloh he started giggling and couldn’t stop. His excitement was so contagious and his happiness won out over the seizures for those few hours.
Shiloh has been absolutely amazing. He is so gentle and kind with the boys. Last night he walked over to Malachi, climbed up in his chair and cuddled in a ball on Malachi’s lap. Malachi was enjoying every minute of the hour long snuggle.
And Levi has been amazing with Shiloh. Oddly enough, his behavior seems to have improved as he is seeing us train and correct Shiloh.
Next week we will go back to pick up Tuck, so this week we are focusing on training them to fit our lives. We had family night Bible study at the house this evening and our guests couldn’t believe how well behaved Shiloh was! It really is impressive and like nothing I have ever seen.
I had to laugh as I thought back to an internal conversation I had with myself several months ago. I remember the exact spot I was standing when I thought to myself: “I think it is time to get dogs again.” And then I proceeded to talk myself out of it, saying “If I can find a puppy that is fully trained than I would do it in a heartbeat. But a puppy like that doesn’t exist.” Our life is very unpredictable and I knew that adding puppy training to the list of daily duties would be very difficult.
It was a few weeks later that I first spotted the post about these puppies. And then it was a few more weeks of me dragging my feet, coming up with every reason I could think of to not pursue. But we know see how that worked out, and I truly can tell you that I have no regrets (so far) after seeing Malachi with Shiloh. It is just what he needed.
The boys soccer team that we coach is wrapping up their season in the next two weeks so we have been packing in the games these last few weeks. The kids both really like going and hearing daddy and mommy shout so loudly. Levi mimics everything dad says and Malachi clings to every swirling emotion we toss out there.
Levi has been a lot to handle this week. He is in a stage of life where you can’t turn your back on him for even a second. And yes, that is half of a giant Easter egg on his head.
I don’t know if you can sense the theme in these…this boy loves food! Daddy wanted some tacos at 10pm after a game but Levi got ahold of them before dad did. We have cut his feeding therapy down to one session a month and would love to be able to eliminate it altogether but there are still some sensory issues we are working through.
This week I have been mesmerized by Levi’s empathy. Empathy is not my strong point. I find myself being embarrassed to admit that but I will say that it is something I am making a concerted effort to improve. It just doesn’t come naturally like it does for Jake.
Jake is oozing with empathy and a tender heart and Levi has most definitely inherited his daddy’s heart…which is a wonderful thing.
This week we were watching a video compilation of babies getting hearing aids for the first time. I explained the video to him before we watched it together, explaining that some of the babies had never heard their mom and dad’s voices before. We watched it together and I looked over to see a giant smile on Levi’s face and tears streaming down his cheeks. He caught me looking and said “Me crying!” And I asked him “Are you sad Levi?” To which he replied “No, me happy!”
The very next day I was speaking some words of affirmation to Malachi and I caught Levi listening in. I told Malachi “You are so loved by everyone who meets you, and especially God. He made you so special and so amazing with such a kind heart…”
I glanced over to Levi and saw his bottom lip quivering as he smiled and listened to the words. I asked him “Are you okay Levi?” And the floodgates opened. He began sobbing and gave Malachi a big hug. I asked him why he was crying and his reply melted my heart: “Malachi so amazing.”
Seriously y’all. He has such a tender spirit and God has blessed our family with such a pure hearted empath.
Confessions of a special needs mom/wife: this life God has called me to requires a lot of sacrifice…and I am not always a willing participant.
If I am being honest, this is one of the biggest argument topics between Jake and I. In my head I have created this idol of wanting “equal sacrifice” as I desire so strongly to have someone else to share some of the bigger burdens with. Someone to share the zombie moments with, the exhausted beyond words moments, the weary and emotional moments. But Jake has to function in a career so asking that of him just isn’t feasible.
While we share many of the same daily challenges with parenting, the parts that require major sacrifices of time and rest often fall on me as mom. I am in a good mood right now, so I will openly acknowledge that this is how is has to be. But catch me in a bad mood or a “6am and still wide awake” mood and I will be very bitter about this equal sacrifice thing.
God is not a God of equal sacrifice. He doesn’t play the comparison game that we like to play with one another. I am convinced that the game of comparisons has been created by the devil himself as he knows that if we keep looking to the left and right it will keep us from focusing on God.
In Matthew 25 Jesus tells the parable of the talents.
“Again, it will be like a man going on a journey, who called his servants and entrusted his wealth to them. To one he gave five bags of gold, to another two bags, and to another one bag, each according to his ability.”
The parable continues on and tells us what each man did with his bags of gold.
5 bags man went and put his money to work, earning five more bags.
2 bags man did the same and earned two more.
1 bag man dug a hole and hid his master’s money in the ground.
If you are like me I am sure you are totally judging 1 bag man in this story. But how many times do we pull the same stunt in our own lives with the things God gives us? How many times do we take opportunities for spiritual growth that He hands us and bury them instead of finding ways to turn them around and honor Him?
The master in the parable returns to settle accounts this his servants. The first two men show that they have doubled the master’s money and his reply is this:
“Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come share in your master’s happiness.”
The 1 bag man explained his actions and the master’s response to him was:
”Take the bag of gold from him and give it to the one who has ten bags. For whoever has will be given more, and they will have an abundance. Whoever does not have, even what they will have will be taken from them.”
God did not play the comparison game with these three men, but rather he evaluated each of them based on what they had been given.
I know it seems a bit like a stretch but I like to view this story thinking about the bags of money being our burdens. We are not all designed to carry the same burdens. While Jake and I share the same beautifully unique journey with our children, God has designed us each to carry unique parts on that journey.
Yes, there are parts that I convince myself are “heavier” than Jake’s. But if I am thinking clearly I can find pieces that are heavier for him to carry as well. And in the end I need to focus on the pieces God has placed into my arms instead of comparing that stack to anyone else’s.
What opportunities for spiritual growth has God given to you? Have you buried those out of fear? Or have you decided to find ways to grow strong enough roots through them to bloom and multiply?
“Each according to his own ability.”
Those words are so special to me. They remind me that God knows me…even better than I know myself. He sees my ability and He hands me things that He knows I can carry.
When you start to see your full arms as a honor from God it changes how you react to them.
Psalm 51:16-17 “You do not delight in sacrifice, or I would bring it; you do not take pleasure in burnt offerings. My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise.”
I foolishly think that God wants me to carry my burdens well. But the more I dwell on this the more I think that sometimes it is in our broken spirit moments, moments that strip away our pride and self sufficiency, those are the moments that please the Lord.
It is not my time sacrifice, my sleep sacrifice, my constant sacrifice that please the Lord. It is my spirit acknowledging that I can’t do this life at all apart from Him that He delights in.
So this week I am embracing the contrite heart. I am accepting that equal sacrifice doesn’t exist, nor should it. Each of us have been chosen by God for different tasks, and this week I am choosing to find honor in my heavy load.