Shenanigans

Malachi made it through another full week at school without any issues or sickness. Each week that passes he falls more in love with his new routines. In fact, this morning as we were getting him ready for church he yelled the name of one of his favorite teachers. We had to explain to him that he wasn’t going to school today, but would get to go to church instead which seemed to appease him.

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Malachi on his new front porch!

School has made him Mr. Independent in so many ways and Jake and I have been thoroughly entertained by his new possessiveness over things. This week I was feeding him applesauce at dinner and I stole a bite. Malachi saw me and stuck out his jaw, giving me the “how dare you” look. He started swinging his little arm at me, insisting that he get the bites instead of mommy.

He is still being a little stinker in his seat- trying his absolute best to get out of it. It always makes me cringe in pain when he does this- it can’t be good for his neck, but he thinks he is a real comedian when he gets like this.

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I snapped this pic of his angry face this week to share with you. He gets very defined forehead divots when he is really mad. His expressions are developing more and more each day. He even rolled his eyes at one of his teachers this week…something he does frequently towards me and my shenanigans.

Malachi had his first school meeting this week. It was a meeting with the school psychologist talking about what category he should fall under for special education services. This step has to be done before we can talk about his IEP. Let me tell you all, it was so odd being the parent in the room instead of the teacher leading the meeting. What an odd turn of events life has taken. I am very grateful though for my years as a special education teacher prior to having Malachi as it has familiarized me with the process and laws.

Jake and I are very excited to tell you that it seems that we may be moving this week into our new home! It looks like all the finishing touches will be completed by Thursday and we will be having church friends (and anyone else local!) help us move our things in on Saturday. I am so excited about this transition. I am looking forward to Malachi’s shower more than anything else as bending at the waist is no longer possible. Bring on the accessibility! We have been spending a lot of time over there this week cleaning and organizing.

Here is a picture of the front. As you can see, we pull up right in front of the door and wheel him onto the porch. If it is raining, we made the front large enough to back the van under and get him out on the front porch without getting wet. Our porch columns should also get done this week!

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Here are a few updated pictures from the inside.

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Baby Levi’s appointment went well this week. We will see high risk on Wednesday and get to see that sweet little face again. I am 28 weeks today and definitely feeling pregnant.

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My emotions are still a little haywire these days. As I have said over the last few posts, I am sure that pregnancy hormones have something to do with it but regardless it has been a struggle. I keep finding triggers that bring up such hard memories for me. Very odd and simple things keep happening that take me back to Malachi’s NICU days.

For example, I recently dug out my maternity clothing. The last time I wore these clothes was in the weeks following Malachi’s birth as I traveled back and forth to the hospital to be with him. This week I put my hands into the pocket of a jacket and was flooded with emotions as the depth, feel, and placement of the pocket reminded me of the hundreds of times I put the Ronald McDonald key into it.

Simple things but loaded with so many raw and un-dealt with emotions.

Malachi hasn’t been very consistent with his sleeping leaving me a little more sleep deprived than normal. Lack of sleep also increases Malachi’s seizures and this week has been a little unpredictable for both of us. Wednesday night was a rough one, with Malachi falling asleep right when it was time for us to load up and head to school. I chose to delay his day a bit and let him sleep on me, taking him in late.  I dropped him off and as I headed back to my car the tears began to flow.

I read an article this week titled “38 Ways to Tell If You Are A Special Needs Parent”. As I read #35 I couldn’t help but relate.

#35) You are always fluctuating between feeling like a boss, and feeling totally unqualified to raise your child- sometimes within the same hour. 

Let me tell you all- most days I feel completely and utterly lost in our world. I am always second guessing the decisions I make for Malachi and have to daily rely on guidance from God. On Thursday as I got into my car and the tears were flowing down my face I simply told God “I am worn out.” I immediately flashed back to a night I had when Malachi was in the NICU and I verbalized this same cry to God.

Both times, lyrics to a song immediately came to mind. I have typed out the lyrics for you, bolding the lines that have hit my heart hard this week:

I’m tired
I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn
I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
And my prayers are wearing thin
I’m worn even before the day begins
I’m worn I’ve lost my will to fight
I’m worn so heaven so come and flood my eyes
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Yes all that’s dead inside will be reborn
Though I’m worn
Yeah I’m worn
Exasperation this week has been a pretty strong emotion. I have been praying hard for patience with Malachi, particularly with his seizures. I know that his little brain can’t help it but I have found myself getting so frustrated by them. Completely irrational, I know.
Every ounce of me longs for Malachi to be healed of his epilepsy, and to not have to experience another seizure ever again. My mommy heart can’t take seeing something so unnatural overtake his body in that way.
So long story short- please join me in praying for Malachi’s brain to be completely healed. And pray with me that I can armor up against the attacks of Satan and practice a patience that can only come from God.
Malachi and mommy have some big appointments this week with lots of running around- therapies, neurosurgery check-up, AFO adjustments, baby appointments, etc and we need a week filled with a strength and determination that can only come from God! And keeping things as low stress as possible to keep Baby Levi comfortable!
Thank you for checking in on our family this week. You taking the time to walk our journey with us brings us encouragement.
Much love,
Jake, Leah, Malachi, and Levi

5 thoughts on “Shenanigans

  1. You are so loved, Leah. You are an amazing mother and wife! May God pour his strength into you this week. The house looks TERRIFIC! Sending you a BIG HUG!! Thanks so much for continuing to keep us updated and to share your heart with us. Have a great week!

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  2. We will pray about the cessation of those seizures! God has done such miracles in His Precious Child’s life to this point that that would be just another easy one for Him!!!
    So thankful to hear how well school is going for Malachi. They do get challenged around their peers and they have fun with others their age!

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  3. Leah, you look beautiful & radiant!! 💜 I absolutely love your new home. I read your updates each week but I never comment. Today I feel like I need to tell you that YOU ARE AN AMAZING MOM!!!! I am in awe of your strength, your joy, your relentless passion to be the best Mom you can be, Can I just say… YOU ARE!! Oh my goodness!! Malachi would not be where he is today without YOU!! I love watching his progress. He is so precious to me. But can I say, please, out of great love & admiration for ALL that you do… to give yourself grace. The same grace that The LORD gives you. I know that your life is constant & you always have to be “present” & on your game, BUT release yourself from the expectations & allow yourself to enjoy some REST. Just give yourself time , even 5 mins a day, to contemplate that you are FOREVER in UNION with the ONE who not only created you, but Malachi & Levi & Jake. They (The Father, Son & Holy Spirit) know each of your needs far more than you do & they are intimately involved in your lives & long to meet them. They created each of you out of their desire to share their love…. & The Great Dance… Their flow of love, life & other-centeredness with you & in you! Enjoy the Dance (I know you do) & rest in their ability to bring joy, pleasure & fulfillment out of every detail in your life. YOU my friend, are an inspiration to so many, but there are no expectations of you from anyone, only yourself. You are fully loved, fully accepted & fully admired just for who you are. I am praying for you… for an uncomplicated delivery, a healthy baby, a smooth transition & NO GUILT about ANYTHING! You are & will be an amazing Mom to both children. Allow yourself to fully enjoy this gift that will soon be here, without reservation. It will all be ok!! You can do this!! And all of Heaven is on your side!! Much love, Kay

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  4. Leah I just want you to know you are not alone in your feelings of being “worn” . . . I have been feeling “worn”, only in a different way, with Richard being gone . . . I miss him so much . . . You and your family are always in my prayers . . . With all you have to do, I’m praying you have a good week and look forward to the “joy” of moving into your beautiful new home . . . I LOVE YOU, NANCY 🙂

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  5. Love you guys! Grief comes in different ways. As I have been dealing with the death of the one I loved more than life itself; you have been dealing with life that has been exhausting. Grief IS exhausting . Doubting if what you doing is the best is part of grief. The roller coaster emotions are real. Excepting you are human and we all react differently to life and death is freeing. I lost my soul mate. You lost your dream for Malachi having age appropriate benchmarks in his life. No matter how much you hear others say and you say to yourself, that Malachi has made remarkable progress -which he has- as a mom, your heart is aching for him to not suffer with seizures and all the other medical problems he has encountered. You are too hard on yourself. You have the right to feel all the emotions you mentioned. But just remember, you are not the emotions. You are the same wonderful person you were before Malachi, the same person you are continuing to be after Malachi. I certainly don’t know why God didn’t choose to intervene and make everything to be as you expected. I don’t know why he didn’t intervene and let Al live to be 98, as his mother did. But I do know, that when sin entered the world, people have suffered and will continue to suffer until He returns in the air to receive us and take us home. So sweet lady, I’ve said all this to say, I don’t know how you and Jake do all that you do for others, take care of Malachi’s needs, and remain as strong as you do. You, Jake and Malachi are loved and admired by so many. And I am one of that group! I will pray that you have the strength to be Leah….not Superwoman. That you will get much needed rest and not feel guilty when you get it. You are doing a great job. One that most of us would be overwhelmed with! I love you and are proud to call you my friend!

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