Wow! I have so much to be thankful for, I truly do. I just received a promotion to a position that was my long-term goal of achieving; I have a beautiful home, a loving/helpful husband and a precious little girl Reese McClain. I have really good days and then I have those days that just are really hard in every way. Some words I’m going to share may seem harsh or sound ungrateful but that is not it at all. I’m simply trying to be as truthful as possible in sharing our journey.

Being a special needs mom is HARD and quite frankly it can just suck at times. I don’t know what happens differently in those days that are harder than others. Is it the mom that grabs her kids face telling the toddler to shut up, sit down and not move while waiting for her prescriptions at the pharmacy? Is it the mom that complains because her kids are involved in so many activities? Is it the mom that is pregnant unexpectedly with her second child that acts like it’s a huge inconvenience in her life? Is it seeing children Reese’s age walk/talk? Or is it reading facebook post from other families with a XQ28 duplication children that is heartbreaking, scary and overall just makes me sick to my stomach what our future could hold?

After hearing the news that our child has a rare genetic disorder that can cause severe mental and physical disabilities, many people have very kind words. However, one comment that really hurts me, and I know people are meaning it in the most kind and precious way is, “you were meant to be a mom to a special needs child.” Really? Because I don’t understand that nor comprehend how I am “meant” to be a mother to a special needs child. I love Reese McClain to the moon and back but there are a lot of extra steps we have to take daily. When people say this to me I want to say, “Well, I actually think the same about you, I really think you’re cut out to be a parent to a special needs child too.” My point is NO ONE is “meant” to be a parent to a special needs child. I would agree that maybe my personality/drive is a good characteristic to have as a special needs parent and I would agree that having a great husband with family support is awesome. But I would disagree that because I have these components, it warrants me for a special needs child.

I have had many people tell me “No one knows what their child’s future holds” and this is true. However, parents of children that are born healthy and physically and mentally develop on time have a better chance of normalcy. Those parents will never know what it’s like to see your child in the hospital numerous times; try to figure out the most effective way having medicines prepared, spending 1.5 hours to put your baby down every night, make doctor and therapy calls constantly and fight for your baby to receive services so that they may have the opportunity to walk and talk. They will never experience the heartache, the daily thought, will my child walk and talk and the overall frustrations of fighting for those services!

Reese is not crawling, walking or talking.

Reese IS smiling, laughing out loud, eating well (table food)—trying to feed herself, sleeping thru the night and engaged in all therapies. It’s the very small milestones that I must continue to celebrate and be thankful for… it just can be very hard at times. I know without a doubt that God has a bigger plan for Reese and my family than I cannot imagine. I know without a doubt Reese will run to me jumping into my arms and saying “Mommy, I love you”… my timing and God’s timing are just different. I share this with you—NOT to make you sad or pity me but for you to maybe understand the journey I’m on with a special needs child.

God says “For I consider that the sufferings of this present time are not WORTH comparing with the glory that is to be revealed to us” Roman 8:18

I can [and I WILL] bathe in the Psalms, drink the Gospels and surround myself with HIS promises. The Bibles tells us that his word never comes back empty. When our hearts are nurtured in God’s word, his word will be honored. If you would please pray for all those parents of special needs children that our hearts/minds stay strong in the word. That we continue to be given God’s grace and find peace within the word… that we WILL NOT allow Satan to steal, kill and destroy our happiness. Thank you from someone who does Consider it Pure Joy my friends.

8 Days since Open Heart Surgery

Reese McClain had a check up with the cardiologist today and received a great report!  Reese still has a little fluid around the heart; however, the doctor said that was normal at this point.  They removed her stitch from where the drainage tube was–she fussed a little!  Overall she is healing great and we are just so ever thankful to God!

Sing to Him, sing praises to Him; meditate on and talk of all His wondrous works and devoutly praise them! Glory in His holy name; let the hearts of those rejoice who seek the Lord!  1 Chronicles 16:9-10

We are so EXCITED that Reese McClain was discharged from the hospital yesterday!  I know, it’s crazy–only 4 days including surgery day!  Kyle posted on Facebook: “Wednesday afternoon my daughter had open heart surgery and they stopped her heart, looked around inside, closed her hole, restarted her heart and 3 days later they sent her home. God is amazing! Glad to be home, she’s still on oxygen but doctors think she’ll wean off in next couple of weeks. Thanks everyone for all the prayers, messages, and phone calls”… We were amazed and just so thankful for God’s blessings!

The doctors planned for the unexpected with Reese because of her condition.  They put a “central line” in her neck–to administer medication/fluids quickly.  The doctors informed us they normally do not do this but wanted to be prepared–and they did not have to utilize the central line.  They also told us to be prepared for Reese to be on the ventilator for 24 hours and it was removed 4 hours after surgery!  Can you see the pattern… it gives me goose bumps… God was so in that operating room and ICU room!!!  I continue to pray over Reese asking God to comfort her and surround her by angels because I believe we fight a spiritual warfare everyday!  It’s a daily task of putting on the armor of truth.

Ephesians 6:10-18

¹⁰ Finally, be strong in the Lord and in his mighty power. ¹¹ Put on the full armor of God, so that you can take your stand against the devil’s schemes. ¹² For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. ¹³ Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.

¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

On our way home… sleepy girl…

Reese is home and loving it…

My Lovie!

Go CATS!

One of my best childhood friends has been by my side thru all the ups and downs this past year.  Her friendship has meant the world to me and really helped deepen my relationship with Christ–I thank you Meagan for all the encouraging words!   She sent me this the day after Reese’s surgery–God is with us all we just have to ask him!!!

There is no other way to explain Reese McClain’s successful surgery and road to recovery but thru the power of God!  It’s truly amazing and we cannot thank everyone for their words of encouragement and being a prayer warrior for us–truly a blessing!

Kyle mentioned in the previous post about how we were told what to expect after surgery but I wanted to touch on it from a mother’s perspective.  Many that know me well… know I’m a planner… So, I googled images of 1 year olds that had open heart surgery trying to prepare/wrap my head around how I was going to see Reese.  NOTHING prepares you to see YOUR child with so many wires, monitors, tubes and ventilator hooked to them.  The room was so bright and shared by another baby with just a small rolling curtain separating Reese and other baby.  Beeps were going off constantly and I had one of those moments were it feels like everything has just stopped… and you lose your breath.  The nurses told me that I could talk to her and touch her… I didn’t know what to say because I knew if I said anything that I would start crying (I was trying to be strong and not cry)… so I reached for her hand…  Then Reese started to try and open her eyes and got really upset because of the ventilator and held her breath…. she turned purple and I had to sit down–crying.  I couldn’t take my baby girl being so upset because she knew her momma was there but was scared.  It’s THE HARDEST thing I’ve ever done.  As I’m sitting beside Reese’s bed.. I’m just asking God “please give me enough strength to stand by my baby girl, ask the nurse questions and let Reese know everything is going to be ok”….

I went home that night and Kyle stayed behind to be with Reese I told a dear friend, “I’m not strong enough for my own daughter” because they were going to remove the ventilator but she had to be fully awake (would be upset) for 15 minutes or longer–I simply could NOT handle her being so upset… I thought I would pass out!  Her response, “But Jesus is!  Good news, sister.  you don’t have to be strong enough”!  That is sooooo true!  I am not strong enough without God… I could not find joy each day without his hope, I could not love on others when my heart is broken without his grace, I could not hope for my daughters future without his promises!  So it was only for a minute that I worried if people would think I was a horrible mother for not staying her first night in ICU because I wasn’t strong enough.  God works in amazing ways… but he was with her… her daddy of course  was there and Reese was being cared for by the best doctors/nurses!

Cast your cares on the LORD and he will sustain you; he will never let the righteous fall. Psalm 55:22

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9

If you are in a situation where you are taking care of someone else… or helping someone daily–I encourage you to recognize your limits.  Limits are NOT a bad thing… and I had to learn the hard way.  The very first time Reese was in the hospital I didn’t leave her side and it took a toll on me mentally and physically but more mentally.  I love my daughter to the moon and back and would do anything for her and I’m blessed to have so many wonderful people to help me out!  Therefore, I now accept that help when I wouldn’t before because before I thought I could do it all on my own and I CANNOT!  It’s ok… to say I need some “me” time.  When we first start discovering Reese had medical issues–I just forgot about myself in everyway–horrible idea.  I am now proud to say I’m back to working out, which I enjoy so much!  I walked everyday I was pregnant–it’s either time with friends or when I’m by myself God and I have long talks!  I joined Weight Watchers to get back to that healthy lifestyle eating so I can offer that to Reese as well.  I think many people often think it’s selfish to leave a little time for mom or dad but it’s healthy.  God tells us our bodies are temples for him–treat them as that… and being healthy physically and mentally is obeying his word.

Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; 1 Corinthians 6:19

I did pull an all night shift the 2nd night and Reese got to be moved to a regular room and out of the ICU.  It was a pretty good night… we had to do X-Ray and blood work at 3:00am… and she slept thru all respiratory therapy.  I just hated to see her in pain–broke my heart.  She is such a little fighter and is doing an amazing job!  The cardiologist team says that she did perfect–A+ (everyone knows momma likes A+’s) and the pulmonology team said that there were no signs of pneumonia.  We were a little concerned that she could get pneumonia because were were not able to do our normal “vest” therapy and suctioning.  All  checked out well and respiratory therapy is in full swing!

As a mother you don’t want anything to be wrong with your baby… or any type of forever (mark) scar.  I really put too much energy and thought into Reese’s scar because I didn’t want her to be different, have a reminder of her heart defect, etc.. but guess what… once again, God taught me a lesson.

So, God created man in his own image, in the image God Genesis 1:27

As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him. Psalm 18:30

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

I have always dressed a little more conservative so Reese wearing one-piece bathing suits will be just fine!  She is just adorable in a pink one-piece–Love!

And so my baby sleeps–letting her body recovery and making her heart whole and healthy!

There has been so much beauty during this difficult time.  So many people pulling together to pray for Reese McClain–a true God thing… the continued growing into a woman of God.  I am so far from perfect but I am so full of God’s peace and grace–my feet are set to dancing!

Life isn’t about waiting for the storm to pass; It’s about learning to dance in the rain! 
So, go dance my friends!

“Let them praise his name with a dance” Psalm 149:3