Thursday, March 20, 2014

Redemption of the heart

First of all, sorry this has taken so long. I should of updated facebook, but I never feel like trying to fit my feelings and thoughts about the day into a short status update.

Today was one of those days when God shows up in the most unlikely places.

We were praying and waiting for God to show up for Ivan today and he most definelty did, but I can't help but feel like today was more about "my" heart than my little man's.

Today God allowed me to sit in the same exact room where my whole life changed over 2 years ago. The small room we sat in today during Ivan's echo was the same exact room where I was when the life I once dreamed of and thought I would live was completely stolen from me. It was in that room that I first gained the title of not just "heart mom", but also "mother of a child with special needs." Although I wouldn't accept that title until well after Landon was born... it all started in that small, dark echo room. You don't forget moments like that. That whole day will forever be engraved in my mind and today when I realized where I was it almost felt like returning to the scene of a tragic crime.

Except there was no sorrow...

today I returned to the place where my greatest fear became a reality and I brought joy and laughter into it... and that my friends, brought a healing and redemption to this mama. I didn't know that my heart still needed healing from the trauma it experienced as such a young mom. All I know is that after today, I feel lighter.

Like a hard place in me has now healed.



If you would have told me December 6th 2011 that one day I would be sitting in this room with my newly adopted son, I wouldn't have EVER believed you. All I wanted back then was our "normal" back. We begged and begged and begged God for a miracle to heal Landon, but He never did. I went through a long period of being angry at God.

Today as Landon sat nestled under my chin in his toddler carrier and I pushed my eldest son in the stroller,  during our walk after Ivan's appointment, I just poured out thanksgiving to God. I thanked Him over and over and over again for not answering our prayers. I thanked him for the long hill we've had to climb with Landon because without it we would never have Ivan in our family and I can't even let my mind ponder where Ivan would be today if we hadn't adopted him.

I know that this post isn't what any of you were expecting to read. I know you're probably all yelling at me telling me you just want to know the results of his echo, but I feel like what God showed me today is even more important than the results we heard today.

I say that.... really because... I can.

I can honestly say that God has brought Ryan and I to a place in our lives where we could walk into the heart and lung clinic today praying for good news and longing for a miracle, but determined that we would praise God regardless. Knowing that no matter what we may come up against in this life we will be okay. Not because we are strong, but because our lives are safely rooted in our faith in the One True God.

A God who can take tragedy and use it to make a story more beautiful than words can describe.

A God who felt my pain and comforted me when I yelled at him and told him that He made a mistake.

A God who loves in such a way that He can be present in our momentary pain and yet in the same instant be redeeming it.

I pray that those words lighten your heart and encourage your soul to keep fighting the good fight. You don't know the redemption God has in store for you. You may only be at the begining and can't see anything further than the pain.

Would it be enough for you today that God can see your redemption.

Cling. to. Him.

And don't EVER let go.



Thank you for praying for Ivan's heart. Thank you for praying for a smooth appointment today. All I can say is prayer works!! Ivan did amazing during everything! It was seriously a very joyful day. Ryan and I were so proud of our brave little boy. He melted the nurses hearts and laid still for the echo technician. After the echo was finished we met with Dr. Fernandez who told us exactly what we have been praying for.

Ivan's heart is completely healthy and functioning properly!!

He said the difference in O2 sats was probably his bodies reaction to being under anesthesia and just something we will need to be aware of in the future.

All I can say is praise Jesus!! Praise His sweet sweet name!!

Today was such a precious gift. Not just because of the good news (although Praise God for good news!!), but because I realized that I'm becoming free from the fear of bad news.

When you cling to Jesus through the storms of this life, on the days when the clouds clear, the sun shines more glorious than it ever could without the memory of the rain.

Even in darkness light dawns for the upright,
    for those who are gracious and compassionate and righteous. 
 Good will come to those who are generous and lend freely,
    who conduct their affairs with justice.
 Surely the righteous will never be shaken;
    they will be remembered forever. 
 They will have no fear of bad news;
    their hearts are steadfast, trusting in the Lord. 
 Their hearts are secure, they will have no fear;
Psalm 112


Now for some pictures, just because I can... and I'm a super giddily proud (borderline obnoxious;) mama :)


The other day Landon grabbed Ivan's legs and lifted them up and down while saying "stretch, stretch Ivan"


Landon's learning to pull up his pants, but he doesn't really know when to stop lol

Mr. highwater saggy bum

Brotherly love <3 Melts a mama's heart!!





Sunday, March 9, 2014

Another broken heart... (4 months home update)

This month.... wow.

More than once I have found myself pausing and remembering what life looked like for our family of 4 before we entered this crazy life of therapies and appointments almost. every. day.

I am so very grateful that God gave Ryan and I the wisdom to not jump into this right away. I am thankful that we were able to take a couple months to purely cocoon and enjoy the Holidays.

2014 has already been such a crazy and busy year. 

I was sitting in church today and God seemed to ask my heart where it is at right now. After an amazing time of worship and letting my heart be opened to and reminded of the greatness and kindness of my Lord, I was able to answer Him honestly.

God, I feel like we are completely beat down... but not destroyed (2 Cor. 4:9) and yet even in the midst of this pain... You are here. Your peace that surpasses all our understanding... we feel it.... thank You

You see just when we thought we had heard the extent of Ivan's diagnosis'... just when we were finally coming to terms with his hips and how that is going to affect his future... just when we were feeling confident that we knew everything and could now begin the long journey forward with Ivan... we got another... surprise (for lack of a better word).

Ivan had dental surgery this past week. 

It sounds worse than it really was. They just filled all his cavities and did some other minor things that could of been accomplished in a dental office except for it would have been too traumatic for Ivan right now. After Ivan's very short dentist visit a couple months ago we agreed with the dentist when he told us that putting Ivan under anesthesia at the hospital was the best option for him. 

I have been dreading March 5th ever since. I figured Ivan would have a really hard time with being in a hospital for such a long amount of time, but our little man amazed both me and Ryan with how well he handled everything. We had to sit in the pre-op room for over an hour and the whole time Ivan was calm and happy.



With his little cat the hospital gave him
This was taken 15 min before going into the OR. They gave him a medicine that made him really drowsy so he wouldn't get upset when they put the mask on him.
The surgery itself did not take very long at all. Ryan went and got us some lunch and by the time we finished eating, the doctor came out and told us he was finished. We went into a room to talk about how everything went. The doctor told us that he did great and they accomplished everything they needed to, but they did notice something strange when they were monitoring his oxygen saturation's. He explained that when they put the pulse oximeter on his finger his sats were between 95 and 100 which is perfect, but when they put it on his toes they were only measuring in the low 80s. He told us not to be concerned because he obviously isn't showing any signs that he is struggling to breathe and his heart sounds good, but he thought it was something we should get checked out.

We then went to go see Ivan who was just begining to wake up. He was still pretty out of it, but the first thing he asked for was the pictures he was coloring before the meds kicked in. Ryan and I just laughed, seriously this kid is so stinkin smart!!

Soon the anesthesiologist came in and started yelling at the nurses to get another pulse oximeter on his finger and while they were scrambling to do so the anesthesiologist phone rang and he said "this is him, you have to take over." The nurses then finished what he was doing while he described Ivan to whoever he was talking with on the phone. Ryan and I glanced at each other with the, all too familiar, "what the heck is going on" look.

After the anesthesiologist finished his phone call he apologized to the nurses he yelled at and then sat down to talk with us. He told us again what the doctor had already explained regarding Ivan's dramatically different O2 sats, but then he went into a little more detail about what could be causing this issue.

It sounded to me like he was hinting at the possibility of a heart condition, but he wasn't being really clear so I asked him straight up, "Does it seem like it's being caused by a problem with his heart or his lungs?" He then sank back in his chair, sighed, and told us that he doesn't know how to explain it without making it sound somewhat frightening. We told him that we have another child who has a CHD so we just want to know what he thinks it could be. He seemed relieved that we were familier with the terminology and then went on to explain that he was just on the phone with the pediatric cardiologist, who told him that it sounds like Ivan may have Patent Ductus Arteriosis (PDA). He explained to us that there is a blood vessel that's present in a baby's heart when they are in their mothers womb, but after they are born they no longer need it and it closes. It is possible that this vessel is still open in Ivan and that is why blood isn't flowing normally throughout his whole body.

None of what he told us sounded foreign to us in fact all the terminology was all too familiar. After Landon was born he had to be placed on a medicine to keep his ductus arteriosis open until he could have his first surgery to open his pulmonary valve. We asked the anesthesiologist if he was on the phone with Dr. Fernandez. He said he was and seemed happy that we already know him. As God would have it, we were actually scheduled to see Fernandez the next day for Landon's 6 month heart echo. The anesthesiologist called it serendipitous, but we know better.

God's timing is absolutely perfect. The Lord watches over our coming and goings both now and forever more (Psalm 121:8).

The next day I took Landon to his echo and before we were finished I told Fernandez about Ivan and as soon as I said dental surgery he knew exactly who I was talking about. He told me again that from how it sounds Ivan most likely has a PDA, but there is no way of knowing until we can get a good look at his heart on an echo cardiogram.

So before leaving the hospital I stopped and scheduled not only Landon's next echo in 6 months, but also an echo for Ivan next week.

I left the hospital in shock....

In a way this one feels familier.

When it comes to cerebral palsy we're still pretty clueless...

scoliosis.... we're just beginning to learn...

Hip Dysplaysia... we have no idea....

But CHD's .... this we know.

But even though we have an amazing team already in place and even though we know the lingo, and even though we don't have to google or search for groups of parents on facebook going through the same thing... it is still scary.

I keep trying to process this in my heart.

I keep wrestling with God....

Really Lord?? Really? Did we not have enough going on? Just last week we find out about his hips and now this week.... this. Lord, would you really give us another baby with a broken heart?

When I told Ivan's pt about all this she told me that she can't imagine how hard all of this is on Ryan and I emotionally and financially.  I told her that this is our life now and yeah, it's hard, but we just focus on one day at a time.

It's overwhelming yes, but we have a foundation now. We have seen God heal and provide in the past we know He will not forsake us this time.

Today I held Ivan in one arm and lifted the other as high as I could as I sang with all my voice and heart

We believe in the kingdom come
We believe in the risen Son.

You bring our hearts to life

Lord we come with our hands up high
We believe You will satisfy.

You bring our hearts to life
You bring our hearts to life

We are alive

In the past couple weeks I have really struggled with anger. 

I feel like I have the right to be angry for everything my child is going to go through, everything he has already been through, everything he is going to miss out on, everything that has been robbed from him. But the other day God poured a truth into my soul and it's something that I want to cling to everyday as a mother. 

God spoke to my heart and told me that Ivan is going to handle all of the pain of this world the way he sees Ryan and I handling it. If you choose to take hold of bitterness then that is what Ivan is going to know, but if you choose joy, peace, and love in Me then that is what Ivan is going to grow up knowing.

I was reminded of that today as I opened my tear filled eyes in worship to see my son, the child who never sucked his thumb in my womb or fell asleep to the rhythm of my heartbeat, modeling me and lifting both of his little arms up as high as they could go to Jesus.

Seeing that makes all the pain and the fear of any diagnosis imaginable seem so small.

Our God is alive!! and no matter how scary and painful this life may be, as long as we have breathe in our lungs, we have the privilege of praising our creator. 

That is the legacy I want to leave for my children.... not a legacy of fear, bitterness, or anger, but a legacy of love.






 Now for some pictures from this past month!!

How we spend most of our days

Helping mama make bars

Playing with the alphabet cookie cutters grandma Ray sent them for Valentines day.

Eating the cookies with their names on them that great grandma sent.


opening the valentines gift from grandma Max. They were SO excited about the balloons!!
Ivan crawled around with his balloon for days later.



Finally a nice enough day to let them play outside. They were SO thrilled!!
The day he got his first glasses
They make his eyelashes look even longer, something I didn't think was possible :)

Crawling through the tunnel

I love this goofy kid so much!!

First walk to the park in 2014
4 month home photo shoot

He lost a tooth last month!!

He may be little but this kid is STRONG. With the help of his pt he's learning to pull himself into his chair.

Putting on his favorite shirt that he got from grandma for Valentines day.


He's so proud of himself
Blowing a kiss for the camera

Those eyelashes... seriously :)

Singing with the radio

Our Ivan Abraham home 4 months!!


We wouldn't trade this child for anything!!

Please pray for Ivan's heart echo on the 20th of this month. If he does have a PDA it sounds like it is a pretty minor fix, he would most likely just need a heart cath, but because it hasn't been corrected for such a long time there is a chance that it has affected the heart and maybe even caused fluid to build up in his lungs. 

We wont know anything until after the echo. Obviously we're praying that everything will look fine during his echo. We know that God can heal and we're praying for and expecting miracles for our baby.

Thank you for following his journey and praying God's will for our amazing son. No trial we face in this life can outweigh the joy he has brought into our family. 

Just seeing that smile everyday reminds me that I am blessed beyond earthly measure to have the privilege of serving and loving this beautiful creation of God. 

Mama loves you sweet boy!!


Wednesday, February 26, 2014

Overcoming the Ashes

It's one of those nights where God leads my fingers to the keys even before the tears have made their way down my face.

It's one of those nights where it all hits me like a ton of bricks, a continuous crashing of bricks on my heart, the weight of good versus evil.

The realization of how real and how huge this battle is that we fight on a daily basis disguised as the mundane.

There has been an article circulating around the facebook adoption community.

I've been ignoring it, knowing that it would likely bring with it painful emotions, devastating reminders of what my baby went through before he became a Maxwell.

You can read the article by clicking HERE

To be honest, I didn't even get through the whole thing tonight.

The words I read rocked me and I let God carry my mind through the emotions I've been holding inside for the past couple days.

I let my mind wonder what a different future my baby would have if God would of just placed him in my womb.

Oh here come the tears again.....

Most days I never even think about the horrific past Ivan has had to suffer through.

Our days are filled with tickles, and constant lovin.

But the past couple days, his past showed up.

It reared it's ugly face in an x ray image that ripped apart our unrealistic hope that we can just "start over."

Yes, Ivan is blossuming and becoming a new creation right before our very eyes.

It's miraculous and breathtaking.

But God is not going to erase his past.

Just as we have to take our  painful consequences and allow God to write a beautiful story with them, our little boy has to walk through the scars his past has left on his body, brain, and precious tender heart.

Yesterday we held our son as the Dr. put the image of his tiny disfigured body on the x-ray, revealing that not just one, but BOTH of his hips are completely outside of their sockets and have most likely been this way for years.

Oh man, here come the tears again......

I feel so helpess...

So many people have made comments to us about how our love will trump everything Ivan has been through.

I try to smile and nod my head, but inside my heart boils with so many emotions.

Wouldn't that by nice, if we really could just erase every memory and heal all of the pain that neglect has left coursing through our child's body?

You better believe I wish that I could, but that's not how life works.

The truth is Ivan will have to overcome more than any child his age should have to.

It shouldn't be this way...

His bones should not be brittle, his legs shouldn't be twisted, and his hips shouldn't be where they are.

My baby has become accustomed to the pain.

Writing that sentence crushes my heart, but it's true.

Ivan rarely ever complains or shows signs of being in pain... he knows no different.

We met with a neourologist and she was completely blown away by how much he communicates and understands.

She told us that looking at his body, he definitely looks like he has cerebral palsy, but she told us that there is a small chance, his MRI could come back completely normal.

"So all of this (I pointed at his little body laying on the bed) could just be caused by neglect?" She said, "Yes, it's possible."

After that appointment we went to orthopedics and that's where we were told that because Ivan is already 6 1/2 and his hips haven't been corrected, his chances of ever being able to walk are unlikely.

Like I said, these past couple days, the evil past my baby has lived has shown up and tried to steal our joy and hope.

We are believing God for a miracle.

Ivan has already accomplished so much more than we thought possible. It was clear that all of the doctors couldn't believe the progress that 4 short months has produced.

Nothing is impossible for our God.

Our little man is a fighter.

We will do whatever it takes to give our child the best life possible and give him every opportunity to become all that God created him to be.

But please don't dismiss his past. Don't tell us that it wont matter to him or that he wont remember it.

His past is what makes him who he is.

His past is what we work to overcome every day.

AND

the ashes of his past are what God is going to use to make his story so incredibly beautiful.

Please continue to keep Ivan in your prayers.

We have a long journey ahead of us. We just started him on a medicine that should help with his tone (tightness). We were told that we can't pursue leg or feet braces until his tone gets under control. We'll also be working on getting a wheelchair.

In three months we'll go back to Gillettes for an MRI and his first botox injection. When we go back we'll re- evaluate and talk about possible surgery to fix his hips. Please pray that God would choose to perform a miracle and put his hips back in their sockets. It will require a major surgery to fix it and I really don't want my baby to have to go through that on top of all of the other surgeries he has in his future.

Thanks for listening to a mama's hurting heart.




Even with the pain, this child is the most joyful and loving human being I know.


Playing in the waiting room. All smiles, excited to see the "docto!!"

He was SOOOO excited when we told him we were going to see grandpa and grandma. He was beside himself with excitement when they walked through the door!! Giving grandpa kisses :)

With "his" grandma

After bath snuggles with Auntie Candace

He was sitting with daddy when he slowly scooted over onto grandpa.

Every day with our Ivan is a priceless gift from God.

We will NEVER stop fighting for his redemption!!



Saturday, February 8, 2014

3 Month Home Update

While we were in the adoption process I used to dream of what Ivan would be like. I used to long to know anything about his little personality. I wondered what characteristics I would one day use to describe my sweet boy and I couldn't wait to study him and discover how God had created and formed this little one who would one day be my son.

Everyday there are moments when I find myself just marveling at this child. He is the sweetest most tender child I have ever known. He has such an innocence and softness about him which blows my mind because I know just a little of the pain that he has had to endure. He is so strong and determined. He wants to please and make happy. He delights in making others smile and laugh. AND he LOVES to be LOVED. He soaks up our love and affection and he happily pours it back out on others.

He is simply AMAZING.

I know I have said this a million times, but we are so blessed to have him in our lives.

This past month has brought HUGE changes for our family.

We're now very settled into our life as a family of four. Most days are pretty relaxed (in our crazy sort of way) and routine. If nothing shifts the flow Ivan has grown used to, we rarely see any meltdowns from him anymore.

Therapy has made a huge difference for him and therefore, our whole family. The daily visits break up our days and make them go by quickly. Ivan is making daily progress especially in regards to his english. It's amazing how quickly he has picked it up.

Right now we are working with his pt to teach him to pull himself into a chair, crawl correctly, and sit up by himself. He gets stronger every week and is continually amazing his therapists who LOVE watching and hearing (they have daily meetings and can't wait to hear what special new thing Ivan did that day) of his progress.

PT session. Holding himself up in a kneeling position.

Using the pt's scooter thing to help him crawl correctly.

Pushing himself with FLAT hands. He is so used to crawling on his wrists (he kind of army crawls), it's much harder (but much better) for him to crawl with his hands flat.
He is getting more and more comfortable holding himself in the sitting position.
just watching choo choo with brother. They love to sit together.
I feel like I have become a Pt, OT, and speech therapist in the past month. It's a challenge to fit in Ivan's stretches, exercises, facial messages (to help strengthen muscles for speech and feeding), Walbarger brushing (technique to help with sensory processing) and joint compressions each day. We're still learning to fit everything into our routine. I've found that as a mama of a child with special needs, it's really important to give yourself grace each day. Quality time and love has to come first, everything else is built on that. I'll admit, there's days when we don't get our stretching or anything in during the day, but instead of letting guilt take over, I have to remind myself, what really matters is that Ivan knows he is loved, safe, and that his basic needs have been met that day.

Maxwell family homeschool has officially begun. 

It's really more like preschool right now as our focus is on learning english, basic skills, sensory play, and learning the alphabet and numbers.

finger painting with pudding
Ivan has very short daily lessons on the ipad
drinking from an open cup... one handed even!!
Finger painting, he has a disgusted look on his face because he does not enjoy slimy textures.


He definitely preferred using the brush
We play with water almost daily. It calms Ivan and scooping water for hours has really strengthened and stretched his wrists and arms. Double win!! Landon is screaming FISHY!!





Landon giving Ivan his cup. It melts my heart whenever I catch them sharing, which is happening a lot more often now :)
Sensory play with jello. Yes, Landon's tool of choice is the potato masher. We call him our smasher-crasher-tornado child.



Ivan didn't really know what to think of it at first.


They both explored and played with it for a whole hour!!
Going sensory silly!!
 So basically our home school consists of lots of book reading, lots of snuggling, lots of fun, and LOTS of messes :)

This little boy is such a sponge! He picks up new words daily and is already learning the alphabet and can almost count to ten.

We truly never imagined it would be possible for him to excel and learn at this rate.

Love. is. powerful.

He knows that mama and daddy believe in him.

Some days it's still hard for him to break through the limitations that he was confined to his whole life, but he is a brave little man who is exploring, learning, and growing out of the mold that he was born into.

We couldn't be prouder of our Ivan.

We have also been noticing some subtle although HUGE changes in how Landon and Ivan interact with each other.

Ivan is now the first person that Landon asks for in the morning. Landon always makes sure that Ivan has his puppy and if Landon wants "his" cup he is not satisfied unless Ivan gets his cup as well. He will even grab it out of the fridge and go give it to his brother before he even takes his own.

Ivan MUST know where Landon is at all times. He says "nigh nigh Landon love you too" whenever Landon goes down for a nap. He is the first person to know when Landon wakes up and if Landon is sleeping a little too long for his liking he will crawl over to their room, knock on their door and yell "LANDON... HI... MORNING"until Landon wakes up. Ivan, being the awesome big brother he is, will also tell me when Landon is doing something he's not supposed to be doing. The other day Ivan brought me a piece of a book and said "Mama, Landon." Sure enough I went and found Landon tearing pages out of my books. I wasn't too happy about that one, but I just love the big brother Ivan is becoming and the doting (sometimes naughty) baby brother Landon is.

They just MELT my heart by how they love each other.

I was making dinner and I gave Landon a little piece of mango. He went and fed it to Ivan then he came back for another one for himself lol.
My sweet little toddler indulging in his mango
Mommy went out one night and daddy let them stay up and watch a movie.
So whats next for our eldest boy? Well a couple days ago he saw an eye doctor and we got some answers to questions we have been wondering since we first met Ivan. We really didn't think Ivan could see anything except a couple feet in front of him when we first brought him home. His eyes constantly twitched (nystagmus) and we didn't know if that would be able to be corrected. As the months have gone by his eyes have changed dramatically. After about a month home he began asking to watch shows on the ipad and tv whereas before he could not focus enough to really see what was going on. We started to realize that he seemed to be focusing better and showing signs of seeing things at further distances.

We told the eye doctor this and he was very pleased. He confirmed that he does have nystagmus which cannot be corrected, but since Ivan seems to be able to control it most of the time the doctor said he doesn't see it interfering with his life. We really only see it acting up when he is in situations where he isn't comfortable or feeling safe.

The doctor also told us that Ivan can see things near and far away, but he has to work VERY hard to do so. To make life MUCH easier on our little man, he will be getting his first pair of glasses soon. We are so excited to see the difference it'll make for him to not have to struggle and work so hard just to see the world around him. It's going to be monumental for him I'm sure!!

Also coming up, at the end of this month, we'll be heading to Gillettes Childrens hospital in St. Paul MN. Ivan will have two days worth of appointments while we're there and will be evaluated by orthopedics, neurology, and physiatry.

It will be a very busy couple days, but we are really looking forward to getting some answers and finding out what our next steps for Ivan will be.

Ryan and I have such hope that Ivan will walk someday. We will do whatever we can to fight for that dream to become a reality for our baby. We know that he has a long road ahead of him. The neglect that his little body has suffered cannot be erased, but our hope for his future is rooted in the knowledge that nothing is impossible for our God. God has a plan for our dear boy and whether he walks someday or not, his life is going to matter. Ivan has already enriched our lives more than we could of imagined.

Our sweet, silly, joy-filled, 100% perfect blessing. ~ Home 3 Months ~
In God's perfect timing, this song came on the radio a couple weeks ago when my heart was in desperate need of the reminder. It has quickly become our families anthem for this season of life.

There are so many unknowns when we attempt to look into and plan our families future, but no matter what challenges we may face, we cling to the truth that LOVE ALONE IS TRULY WORTH THE FIGHT.


 





Fight on my friends, love is worth it!!