Posted (jooosh) in All Posts on June-22-2008

Praise Jesus we’re home in Colorado. Thank God for our precious miracle of a child. She is so wonderful, and has such an amazing spirit. God knew what he was doing when he created her. We know our Lord is in control. You can’t come through what we have and not believe in miracles or the sovereignty of God. The fact that I can sit here, write this, and my baby girl is next to me just blows my mind.

Tina is off running some errands and I’m hanging out with the Bun. It is impressive to see how far Ella has come, considering all she’s been through, but…

There are moments where it’s tough to see my almost 11 month old baby still not able to roll onto her tummy on her own, or to sit up on her own, or to crawl, or to do all the things a “normal” 11 month old should be doing. I know that even “normal” babies don’t always keep on track, and I know she will eventually gain the strength to do these things. I don’t say this as if I’ve lost perspective of what she’s been through, or to make people feel sorry for us. I’m just being honest about where we are right now because our posts don’t always reflect how we’re doing at this level.

When you see your friends babies progressing at a steady pace, and people ask if Ella is doing such and such, it reinforces the fact of how much further she will have to go to catch up. I can always look and say that someone has it worse, because I know that many do, but I’m just talking about where we are right now and our desire to see Ella make steady progress forward. She is making progress…it’s just very, VERY slow.

I guess the bottom line is: I just want the very best for my girl…it’s hard to see her struggle.

Even getting into a routine at home has been difficult. I wish I could be around more to help Tina during the week and to keep her and the Bun company. To this day, it can still be overwhelming for me to be with Ella alone for extended periods. Of course, Ella’s mood plays into this a lot, but this is Tina’s full-time job and it’s hard for me to fully grasp the impact that taking care of Ella has on her.

And let me affirm, like I have before, that Tina is an amazing wife and mother. Those of you that know Tina understand that she was not cast out of the “suzie-home-maker” mold. God has blessed her with incredible talents that have served her so well in the business world. This is why I am so impressed, even proud, of how Tina has taken care of Ella. She is sooooo patient with her, so loving, and so caring. She has such phenomenal intuition as to Ella’s needs and does so much to make sure all of them are met.

Not only is there a good amount to do when it comes to fulfilling Ella’s needs (i.e. medications, g-tube feedings, dealing with oxygen, managing doctors, plus the normal baby things, etc.), the things that most moms can do to bring balance to their lives (i.e. escaping to the mall, connecting with other moms in the neighborhood, etc.), Tina can’t do because of Ella’s risk of infection. This means not being around other children, and being selective of her exposure to public places. Keep in mind that a simple common cold could put Ella back in the hospital, and something like RSV could be fatal (these germs can easily be spread through the air by someone sneezing or coughing).

We don’t know exactly when we’ll be able to expose Ella more: A very conservative approach would be 4 years, less would be 2 years. This will be an area where Tina and I will pray for wisdom. In the mean time, we need to be so careful, which makes doing a lot of “normal” things very tough.

So this is a different kind of tough…not being in a level 3 NICU for 6 months tough, but still tough.

Even through the times that stretch us, we know that He’s in control, but it doesn’t make the experience any easier. That’s part of the challenge…living out your faith even through the emotions and the circumstances.

We thank Him that we are rewarded every day with her sweet smiles. We are so blessed to have the gift that is Ella Renae.

Amber Riley on June 22nd, 2008 at 10:34 pm #

You do not know me but i was blog surfing one night about a month ago and i found your blog. I have 3 children and my heart goes out to your family I was so taken with your story i sat and read the entire thing one night. You seem like two very strong and wonderful people. I look at you beautiful daughters smile and it reminds me of my little girl who is almost 6 months old. She is such a blessing. We pray for your family and wish you all the strength possible on your journey. You seem amazing!!! Before my husband i got married we live in Littleton for a while so i feel even more connected to you having lived in Denver. Please know how inspirational you are…

Jim and Char Jordan on June 22nd, 2008 at 10:58 pm #

Everytime I see her face and the spiritual glow that accompanies her face it makes me want to sing praises to a knowing God. How you have been blessed to be parents of a wonderful spirit child of our Heavenly Father. I am amazed at your endurance. I am amazed at the patience and love that baby Ella takes. Have faith and even the low times will become rare. We love you and understand your concerns. Have faith and all will work out for your good. We love you. Char and Jim

LoriAnn & The Boys on June 23rd, 2008 at 12:07 am #

Josh, you are an amazing testimony to your wife. I was not the “suzi-homemaker” type either, but the Lord has found ways to make me “maternal”. My boys’ friends might see me as odd, but our sons LOVE that mommy dances, sings and does silly things with them. Having an Autistic child is hard enough. But, the Lord knows what He’s doing by giving me the tools to fill my toolbox every day. Tina, too, has a great toolbox, with tools being added every day. It must be tough to not “connect” with other mommies, or even friends on a frequent basis. I think I would run out of the house screaming every time my hubby came home with all Tina has to do, and yet she does it with such grace. Praise God for blessing you with Ella Renae; nobody could have done a better job than you two with His wonderful gift of your daughter. It was nice, btw, to read a long blog from you. It makes me feel even closer to the little family that I may never see until we are all walking on the street of gold. Blessings. LoriAnn and The Boys

Joel Snyder on June 23rd, 2008 at 3:26 am #

Ella, It is so nice to see you hanging out with Dad. I hope you have a great Monday with Mom and the cats. Josh I have to tell you and Tina that the challanges with Ella will continue but I am so impressed with how you both are handling the job. I am reminded with your comments that Ella has her own schedule and sometimes that does not include fast. I am so happy that you are home and I am praying that this process will contunue to be progressing even slow at times. Have a good week my two heroes. Love,Grandpa!!!!!!!!!!!!!!!

Chambers Family on June 23rd, 2008 at 6:51 am #

You know – I think Ella will grow up to be in pictures…. I have never seen a baby “pose” for pictures and grin for the camera like Ella. No matter what the funny faces you are making – she is a smiley face.

Thanks for your heart lead post; being a parent is so wonderful! But nothing changes your life like precious little one. You know all parents with their first child are anxious to hit the milestones (so we can only imagine the patience you are having to hold) it is almost like we rush them along into toddler-hood and then you look back and say – it went so fast! They are just little for such a short period of time. So – you are getting your “baby” time extended. Because the truth is – when she is 5/6 she will be in kindergarten like everyone else, potty trained, walking, talking and getting put in time-out.

Sometimes I ask myself: “Why do we have hard times, challenges, pain…” I would rather God just make it happy all the time. But we would never find our depth, endurance and become better people. So even now – in our life we struggle. We are struggling to get our business off the ground, struggle with paying our mortgage, and struggle to stay close to each other as we go through each day! It is amazing to see what each day holds for our little family with a 5 1/2 year old and a 2 1/2 year old.

Our hearts are with you guys as you share your family with us. Thanks for being so honest. Fellow strugglers

Tara Hayes on June 23rd, 2008 at 6:57 am #

you are BOTH amazing parents.

Lisa Richmond on June 23rd, 2008 at 7:57 am #

Did you ever think it was possible to LOVE someone this much??? Not until we had children did we really KNOW what it meant..unconditional love. and not until you become a parent do you realize how little sleep is required, that a shower is over rated,…and laundry…it will be there the next day..I think my only wonder as a parent now..is trying to remember what it was like to go home after work and actually just sit on the couch and watch tv all night 🙂

Your strength and wisdom will pull you through the small victories..they may be small, but every victory Ella makes..is still a victory!

Matt, Abby, Austin & Caed on June 23rd, 2008 at 8:15 am #

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5:1-5

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.
James 1:2-5

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12

I know it’s hard not to compare Ella to other babies her age and I know you want the best for her. Stay in touch with God, get into His word, keep praying and know that we’re praying for you.

Eve Johnson on June 23rd, 2008 at 8:24 am #

Thank your for sharing your heart today. It reminds us all that your family still travels a difficult road, and helps us direct our prayers to your needs.

Kara on June 23rd, 2008 at 12:50 pm #

Tina, I remember after I had Deanna being very alone. I had no family and all my friends had graduated and moved on and there I was with a two year old and new born. Rob was working full time and taking 18 hours at school so he wasn’t around either. The only thing that kept me going was the thought of all those women having and raising babies out on the frontier and on the wagon trains. At least I could go to the store and talk to people or turn on the TV and hear adults talk. AND I had electricity and indoor plumbing. Those women were completely alone. Sometimes giving birth by themselves. Now that had to have been hard. And then they had to get up and make dinner. Sometimes you have to go way back in time to find people that had it worse. But they are out there. So all that was to say I know how hard it can be to feel alone with a child that can’t talk to you who requires a lot of work. Of course you have the work of two in one. The one thing I wish I had done was to make a time when I left the house every week. Weather to take a class or go to the bar with a friend. If I had taken more breaks I think I would have done a lot better. Take your breaks and don’t feel guilty about it. It keeps you sane and that makes you a better mom.

Vicki/CO on June 24th, 2008 at 2:06 pm #

Thank you for sharing your heart with us, Josh. You and Tina are such wonderful parents, and I am in awe of all that you do to care for precious Ella. Not everyone could do what you are doing…some wouldn’t even try. But you do, and God knew you would…that’s why this special little girl was placed in your care. By sharing with us, you give us more specifics to pray about because we don’t really know how you are doing if you don’t tell us, and we want to know so we can lift all your needs to our Father! God bless you…all three! “Restore to me the joy of Your salvation, and grant me a willing spirit to sustain me.” Psalms 51:12

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